Have you considered medical Marijuana?---there have been a few unofficial polls here in the last two years -- many have gotten relief -- they have strains of it that don't have the "high"
Please research Cymbalta very carefully--- withdraw symptoms - google them -- very bad for many!
I don't do well w/ doctors either, Thermotronica. I had blow out w/ the one I thought I could TRUST on Monday. Like you, at this point, I am still "not as sick as I think I am"- - etc. I had been referred to a neurologist with a wait of 3 months- but my dentist saw me for tooth pain and got it bumped into 2 weeks. I didn't ask him to do this... He said I looked exhausted and sick. SO. I'm really sorry about the doctor. My family doc will flip - maybe dismiss me, when she learns that my dentist pulled chains to get me in. It just works that way--- or so it seems. I've left forgetting to ask about meds out of frustration, too. I've already been on lots of these drugs for bipolar- so my psychiatrist is managing my Neurontin - and he says if the neuro calls him- that he (the psychiatrist) thinks this is largely psychosomatic. -- I am in NC---- The frustration keeps on a comin'--- so does the pain- . I'm really sorry this happened to you.
xx
thermotronica said:
It didn't go very well. I got really frustrated. He asked an hours worth of questions and then I got the ol' nothings wrong with you. "Your symptoms aren't consistent with any illnesses." I forgot to even mention the licodaine. Thanks for asking I was really down. How do you feel today??
I agree, Cymbalta is a drug to be very wary of. After three months I had severe myoclonic jerking in body, rigid facial dystonia, teeth chattering, and echolalia.
Klonopin can be a dangerous miserable drug to get off as well.
Kc Dancer Kc said:
Have you considered medical Marijuana?āthere have been a few unofficial polls here in the last two years ā many have gotten relief ā they have strains of it that donāt have the āhighā
Please research Cymbalta very carefullyā withdraw symptoms - google them ā very bad for many!
Hello T., I looked up what you have and wow, itās intense. There is so much information about it on wikipedia, wonder that neurologists play the ādumbā card with you. Iām not down on specific doctors, or doctors in general, but maybe itās best if you seek a specialist who understands your disease and you specifically.
Family support is sooooo important. Without support, emotional and financial, but mostly and above all, emotional (love), I am convinced my TN symptoms would be much worse. I have a bad kind, and so rest is absolutely my best defense. Oh, and a counselor, one who can oversee and prescribe drugs is another line of defense. When depression hits, and it hits for months on end, that counselor and my faith in God along with understanding family members helps me stay mostly sane.
Oh, if you lived close to any one or more of us so you could make friends and visit with one another. My heart goes out to you. Truly, Laurel
Hi Therm,
I know that on my days of pain, I am moody and tend to snap at people. Especially at my kids (all teenagers) who don't help much and I still end up doing most of the house hold chores and dinner. I have been out of work for two years so i am thankful that it has not affected my job, but I just finished college and was hoping to begin working soon. I am not sure how I will work and deal with the pain. This does depress me because I want to work. I want to help support my family.
Two years ago I was also diagnosed with PTSD. I am sure this doesn't help with the depression during the episodes. I don't know how to manage it well enough right now, its tough to hold it all the emotions that come along with the pain. Having lost my insurance last month I cannot get professional help either. Another reason to be upset. I think there should be some kind of help for people in our situation, I have tried to look, and its just not out there. It seems really hard to convince people of our condition and how bad it sucks. Im sure others have had similar problems. but all I can say is that I will talk to, and support anyone who needs its! I know we all need it sometimes!
Hi Thermotronic,
This is truly the place to come and vent or just spill your heart out. As much as our friends and family love us and are an important support system, they can't understand what we are going through. I dealt with TN and ATN for 10 years. I was told so many different things from it's migraines, you have nothing wrong, you're looking for attention to even Munchausen syndrome. It came to the point that I didn't know how else to explain things or if the doctors were going to believe me. When you go through a debilitating, chronic illness, depression and anxiety are bound to happen. There's no shame in it. I can't say everyone has been there, but I'm sure a lot have, including me. I was 20 when it all started and by 24 I thought my life was over. I had to go on permanent disability and I was always either at a Dr's appointment or in the hospital. I don't want to sound more depressing, I just want you to know we understand.
And if your doctor isn't helping, find another. I saw 7 different neurologists besides going to 2 different headache institutes trying to figure out what was wrong. It takes persistence and not giving up. This site was a lifesaver for me. It helped me learn about my options and how to advocate for myself. I was fortunate enough that I was a candidate for MVD, I had it done in Nov and I am feeling back to normal again. I wish everyone could find their cure right away and stop suffering. Take care! :)
Getting back to your first thoughts in this post before we got off track encouraging you to find a more suitable neurologist:
āI wonder if any of you who feel similarly to me, can see substance p and its friends that accompany it, not as personality traits, but as excessive emotions. Thoughts still intact, even though our bodys are a little less enthusiastic about demonstrating it.ā
Iāve turned this over in my mind. Yes, for me the ongoing pain has a strange kind of reality to it, and it has become like an unwanted emotion, itās something that I want to get rid of. The more I fight it the deeper it sinks into my well-being. When Iām doing the best is when I can run it on its own track, keep it out of what Iām trying to do in the moment, not get too interested in it. In some hours and some days Iām pretty good at running the pain track alongside whatever Iām doing. Other times its a no go. There simply isnāt enough energy to do that. Fatigue takes over. My mood falls flat and sinks. But perhaps this is the self-defence part of the physical body saying, enough, you need to rest and replenish. All that substance P and the cytokines and whatever else, need to be flushed out. For as much as we may wish otherwise, we are compromised.
I would like to mention I give them a few tries before I let a new doctor go. Building a relationship with them is step one and I just moved. Klonopin I found to be very addictive but it does help the pain. MM seems to be a good choice but I live with my Lil bro and sis and don't want them exposed to it, so that's going to have to wait. Kate sorry about your insurance, I was in that position as well so I tried to be off medication but luckily I will have it for another 5 months. The 2 months I had nothing but nsaids was awful. Unbearable I hope you qualify for Obama care or medicare or some program because its really hard without prescription. My problem is I get dizzy most of the day and makes even searching for these programs so difficult. I feel useless! My mom has helped me so much I'm truly very thankful and lucky.
On a different subject, I know rest is very important to us. But I get bored like a normal human regardless of how much nausea or pain I feel. How do you guys cope? I've run out of activities that don't involve the computer. I like going outside and stuff but like I mentioned, it gets tough. Boredom I believe is also a huge problem in our situation.
You could take a free - tiny fee - local community college class
Just look under community education or adult education -- belly dance - basket weaving - photography etc.....LOL
And about MM - they come in edibles, powders, drinks, salves --- legally it is not even an option for most of us
Keep Posting! You seem to have gained quite a following : )
The ipad helps me immensely. It is like my companion. Not affordable by everyone, so I think that if friends and relatives can do one thing to help their loved one, an ipad is an ideal gift.
Boredom is a bummer. I have a couple of little dogs. Started with one. He became a constant companion to me. Heās half shitzu, half maltease. I hold him against my face for a living warm comfort. Itās therapy. He likes and needs walks, so it forces me to get out. The other dog is a chiwawa that incessantly bothers Gizmo. It is so funny to watch, and Gizmo takes it all mostly in stride. I taught Gizmo tricks when he was young. One dog is just fine. Shitzus are very laid back. A good choice for someone who has our condition. The maltease part of Gizmo is kind of a little tiger. The chiwawa is a girl - very loving and playful. She sheds more than Gizmo, but other than that sheās really a fun dog. Most people like the little girl chiwawa the best, because she is really sweet and doesnāt have a mean bone in her, plus, she looks like a miniatue deer.
I have tried volunteering since I cannot work, but volunteering causes the same kind of stressors as a job, because it is, after all, a job. Qigong is an excellent way to stem boredom for TN sufferers. The wuji form is gentle and flowing. I bought a Daisy and Gary Garipoli (sp?) dvd for beginners, and also one with twenty minute segments. Hey! Itās been a while since I did those. I am going to get them out and start practicing them again.
I really hope you feel better soon. Pain like this for one as young as you are has got to be tough. Keep believing you are going to get better. One way or another you will.
I can only take so much screen time in a day. And I can only work on my drawings for a certain time as well, and some days I have no focus at all and if I push it I am in double double. So to occupy myself I borrowed a full keyboard electronic piano and I have been learning scales and a few pieces. The advantage of the electronic piano is that I can keep the sound really low. Playing piano is something I always wanted to do, so itās part wish-fulfillment, and part helping my brain not to turn to mush, which has been a big fear since I started taking buckets of anti-convulsants. Sometimes I just feel around the keyboard with my eyes closed.
Lots of interesting podcasts out there as well.
I keep moving slowly most of the day with household tasks and making food.
Good ideas. I know that being bored is silly when I feel nauseous all day but it does eventually feel like prison. I'm going to have to find a hobby that keeps my mind clear. I have a poor time looking at a screen too. Half an hour of television is work. Haha. A class to train my mind back to school is a great idea. Belly dancing , I'll save that for shakira. I do feel my body getting used to feeling like I'm deep sea diving and my body decided to just send oxygen to my brain and heart. I used to play keyboard too, great tool.
Yeah, boredom is a killer, and it directs too much attention to our own suffering, too much attention to where the pain is.
Help your body adjust to its new state by not forgetting that itās there. Self massage does that. I do a series of stretching and massaging every morning when I wake up before I get out of bed. This helps the nervous system remember that itās not just a bleeping throbbing burning stabbing trigeminal nerve. And itās the only time of day I can touch the back of my head to something. I feel a lot better all over.
So stay in touch with your body.
Hi Therm, gonna look into that Obama care. Fortunately I did manage to get a 6 month supply of my prescription before the insurance ran out. Hope you find something that works, and to keep you busy, I like knitting it keeps my hands busy keeps my mind occupied. Bright lights and noise seem to make things worse for me too just like the others. Hope you find something soon.
Hi T., now I am getting a better idea of your level of pain. I remember whenā¦ Couldnāt look at a large computer screen for long; felt nauseated all the time; no energy; horrifying pain on one side of my face that intensified like the aurora borealis; fear;boredomā¦
Was removed off carbomezapam(? Sp) due to problems it was causing for my liver. Between diagnosis and MVD surgery I only had to wait six weeks. It was the longest six weeks of pain, including a stint in the hospital for severe pain, but really, as the time neared for my surgery, I was beginning to have some moments when the pain edged down some, so I didnāt go completely insane. I couldnāt read. I mostly stayed in a dark room listening to books on cd and watched movies on a laptop that sat beside me while I layed on the side of my face that wasnāt in pain. It was a nightmare. I took heavy duty medications to put me to sleep, but often layed awake in pain and tears.
Oh, I am very sorry for your boredom and pain. It will get better. You are doing the right things. You can get through this. So many of us on this site can attest to that, you must believe it for yourself. You are a really nice guy and I bet you have a great family.
I am sorry for your pain too. And for yours as well Laurel.
Today was a fairly upbeat start for me and then it all came apart. Some days are like that. Whole blocks of days or weeks are like that. So another answer to āwhat do you guys do all dayā, for me, is wait it out for a better day. I drape myself over one piece of furniture and then another, flop from room to room ācountinā flowers in the wallā. Little or no tv, no talking on the phone, I donāt see a soul. If I can get through 48 hours like that I usually come around a bit. Thatās when I sit at the keyboard or my drafting table.
You are so young. You sound smart. You need to have something to look forward to. Is there a correspondence course you could take where you work at your own speed?
What interests you in the world? What turns your crank?
Thanks great ideas and motivation. This site is undoubtedly the most help I've gotten from anybody else. I respect your ideas and experiences.
I used to read physics articles non stop to forget about the pain. I changed my major and just wouldn't stop reading. That was until late 2011. I lived in a nice apartment, decent job. I was pretty much a hermit by then when i asked my family for help with a physics paper and they thought I was a nut job.They ended up supporting me until now but I crashed intellectually. Don't read anymore. Lost motivation. Also nausea made it harder and harder to keep it up
I'm trying though. Looking for a job daily. The middle of the day is nausea time always but I'm used to being independent. Being supported is very lucky, but I want to have a career and the house and all. I used to DJ by myself too. Good reviews.
Well on a positive note I woke up feeling really good today. Wish you all the same!
Aaaahhhhā¦thatās the beauty of being part of this site. Voicing our pain, and our encouragement to one another. It seems like a miracle to me, because it works. Have a wonderful day T.
I often feel people get PTSD confused with regular stress. But its understandable. I do have PTSD, diagnosed because of an abuse and some bullying I experience in grade school.
Stress with this illness is hard, its not enough to have TN but to live with the headaches the depression and the anxiety of knowing the pain will return. I think that it does feel like extreme cases of stress. And often stress induced pain. I know that when I am stressed out, the pain will flare up or I get stressed out because of it. It often does feel traumatic but certainly not the same.
PTSD is caused by trauma so I think that is why its classified as different type of stress. But I think that having PTSD does not help in dealing with TN at all.
Debra said:
Hi, YOur words really touched my heart. I feel the same. I wonder where I am. As this person I have become is not me. The medication changes you and the constant pain or fear of pain makes you on edge all the time. I feel its like having post traumatic stress, but its not 'post' its current. I explained to someone yesterday, Imagine your followed every where you go by a man with an ice pick and a tazer gun and you never know when he's going to stick you. It tends to leave you a bit on edge.I had some lidocaine patches and they did nothing at all. The outside of my skin was numb but it doesn't get deep enough to help. Good luck xxx Thanks again for your words. x
thermotronica said:Thanks. I'm going to ask my new neurologist about licodaine tomorrow. it does feel like a 6th ssense! I wish I could get MVD but its not my cure, I have demylienation. Thanks for the comments
Today I went for acupuncture and cranio sacral treatment. While waiting for my therapist to get ready, I started playing with this two toned chime. Hitting the two vibrating tones in acertain way seemed to make my pain neutralize. After the sound settled, my pain was still with me, but it was so nice to have a few moments of pain free bliss. Anyone tried something like this? I think Iāll get something like this as a non- evasive form of temporary relief.
My therapist sent me home with some special chimes ( web site: http://www.acutonics.com/ ). Very intriguing. What do you guys think of these?
Kate1978 said:
I often feel people get PTSD confused with regular stress. But its understandable. I do have PTSD, diagnosed because of an abuse and some bullying I experience in grade school.
Stress with this illness is hard, its not enough to have TN but to live with the headaches the depression and the anxiety of knowing the pain will return. I think that it does feel like extreme cases of stress. And often stress induced pain. I know that when I am stressed out, the pain will flare up or I get stressed out because of it. It often does feel traumatic but certainly not the same.
PTSD is caused by trauma so I think that is why its classified as different type of stress. But I think that having PTSD does not help in dealing with TN at all.
Debra said:
Hi, YOur words really touched my heart. I feel the same. I wonder where I am. As this person I have become is not me. The medication changes you and the constant pain or fear of pain makes you on edge all the time. I feel its like having post traumatic stress, but its not āpostā its current. I explained to someone yesterday, Imagine your followed every where you go by a man with an ice pick and a tazer gun and you never know when heās going to stick you. It tends to leave you a bit on edge.I had some lidocaine patches and they did nothing at all. The outside of my skin was numb but it doesnāt get deep enough to help. Good luck xxx Thanks again for your words. x
thermotronica said:Thanks. Iām going to ask my new neurologist about licodaine tomorrow. it does feel like a 6th ssense! I wish I could get MVD but its not my cure, I have demylienation. Thanks for the comments