Has anyone been referred to and/or followed through with Therapy?
So you know how you have appts, but its impossible you never what sort of condition you are in at that future time. This can be good such as going to the dentist when you feel good or bad such as when you go to the neurologist and all your symptoms seem to be on hiatus... well at my last physica, I was pretty beaten down by multiple severe episodes. My physician (who had properly diagnosed me on day 8) had never seen me in that mental "condition" so they immediately recommended me to Therapy (note this was 2 months ago...).
I know I am super manic now. For example, I can swing to extremes within an hour and then back such as super happy, then suddenly feelings of uncontrollable sadness where I break down and cry b/c some song on the radio was sad, which is really weird for me b/c I have never been an emotional guy nor been able to express myself well. I know that the *new* me is less-than-pleasant to hang out with all the time. Also, I fear that my impatience, temper, etc is causing some irrepairable damage to the relationships that mean most to me. I never have feelings of hurting anyone nor myself (except for that jerk in the billing office at my neurologist who keeps double billing me :-), but somedays I just feel out of my mind crazy.
After 13 months and trying both the glycerol injection and the gamma knife with very slight success, I am working with Johns Hopkins to determine if the MVD will "fix" me (they are very confident they give me my life back, but I remain cautiously skeptical). The prob is that my entire coping strategy is to NOT give the TN a high level of attn, meaning I know its there and I feel the searing, shocking pain, etc but I can put in a box by busying and filling up my mind's capacity with either work, projects or physical activities (golf, running, or even sanding/restaining the deck and the outdoor furniture), but the process of preparing for this MVD has put a giant spotlight on the TN and I now am sooooo aware of the pain and its affects (as well as the affects of my meds esp since they have upped my dosage too...)
Also I hate to add another Dr into the rotation by going to therapy as well I am fearful that they will play guinea pig with me again with yet additional meds, but I need to figure out how to get through this...
Anyone have any recommendations/guidance/advice in this area?
Are you talking about psychological therapy? Seems to me the pain is causing a lot of your psychological problems. I went through the pain and it was excruciating. How in the world can you act pleasant or “normal” when in pain or not knowing when pAin will strike. I, like you, did my best to ignore the pain or believe it would go away on its own. When I found myself on my knees screaming in pain, I decided to push my way to the neurosurgeon. There is a reason I say push and that is another story. I wound up with MVD. I am much more pleasant or so says my family. No one on the outside looking in “gets it”. No one can understand the toll it takes in every way, not even a psychologist. Concentrate on easing your pain then seek psychological help if you still need it. Give yourself a break, this is not an easy road. Keep me informed on what you plan on doing and how it works out.
I was referred to therapy in April this year when I broke down, physically and mentally - I had had pain in my teeth from my ATN and all over the face from my TMJ Disorder but no doctor was able to diagnose me then. One night I ended up in a psychiatrist's emergency room after having suffered a string of panic attacks. I just couldn't cope any more. He gave me a couple of sleeping pills and a recommendation to see my GP. My GP thought I had the burn out syndrome and that my pain was imagined. He wrote out a prescription for ADs and a referral to see another psychiatrist who'd do the cognitive-behavioural therapy with me (because of the panic attacks).
Before I got to see the psychiatrist I received a diagnosis for both my conditions. I'm currently into my 3rd month of the therapy, during which a whole lot of "issues" got revealed. I both like it and dislike it because my pain usually gets worse after a session as we talk about subjects that had an impact on my life and are still painful for me and I cry a lot during the therapy. I know this is not what the doctor or I expected when we first started the therapy. I thought they'd teach me how to deal with chronic pain emotionally, instead I get to talk about my family etc. on top of talking about my pain. I'm asked to do homeworks, sometimes I'm not able to do them and it's ok except we don't move forward that much on such days. One day I wasn't able to come to the appt because I wasn't able to get out of bed all day (change of meds from Neurontin to Lyrica). Althought I called on the day of my appt, it was ok, the doctor was very understanding, she knows I don't misuse my condition to make excuses for myself. When the doctor noticed that my mental state got worse (in line with my worsened physical state), she suggested antidepressants. I was hesitant because of my previous experience with ADs prescribed by my GP, but the psychiatrist prescribed me pills that really work for me and I got my life back on track, at least partially.
I think overall the therapy is a good thing, I realized I was holding so much inside of me for decades. Like you, I find it hard to express what I feel, and the therapy gave me a chance to vent my feelings and to learn how I can manage them better. I feel more emotionally balanced now and also more energetic - probably thanks to the pills also.
Yes, I went for a period of time. I would suggest asking why you are being sent, then having a conversation with the therapist about why you are there. I did get some ideas/strategies for coping with the pain. And pain has a psychological component, so I figured that part of being willing to try anything is going to the therapist when you are referred there. Who knows, maybe it will help. Realistically, you are also being evaluated, and if your doctors want you to go as part of your treatment plan, you kind of need to do it, right?
It was helpful to me to talk to some friends who go to therapy for other reasons. They said that you never, ever feel like going, and that it isn't usually at the moment of crisis that you happen to have an appointment. But you commit to going for a certain period of time, and to being as open as you can, so that you can benefit from whatever help they can provide.
I have been going to therapy for years with a wonderful psychologist. I had a real bad time in my life about 12 years ago and she really helped me through it. In a nutshell, things crashed down on me all at once and I just could not handle life in general. I was going once a month the last year since I had been doing so well. I think it was the best move I ever made, and I continue to go just to keep a mental check up so to speak. I havent gone since I have gotten TN but I have spoken to my psych by phone since I cant drive much.
I look at it this way, if we are taking care of our physical health, then why not mental as well? It all rolls in together.
You have my phone number , if you ever need to talk, just call
You can get an anti-anxiety from your regular doctor to take the edge off your moods for now - and see a counselor who is Not a Dr.
You would look for an LPC or an LMSW. Both qualified to help with emotions and taking care of yourself.
Or you can go to a psychologist or psychiatrist.
Just one day at a time -- but with us it's like one hour at a time!!!
I think sometimes it is worth trying things to see if they help, you don’t have to go forever but perhaps someone could give you some useful coping strategies.
I have started meditating every day and getting some physical exercise and I am finding it so helpful for me.
I now realize that I am going to be dealing with this for a long time and I am trying to get some control back in my life, just doing these few simple things is really helping my mood.
Good luck and big hugs
Albee, what meds are you taking for TN? Some meds made me so crazy that I stopped taking them after 24 hrs. What it turned me into scared me so bad. Do they have you on steroid therapy? As far as behavioral therapy, if that's what you're referring to, I would not turn down the chance to participate. You'll know how you feel about it after you try it.
It's very hard for me to keep appts of any kind. I make an appt to get something done at the dentist, and sure enough, my TN flares and I have to resched. Pain can turn a person into an animal (no offense to animals meant). It takes you over and reduces you to a throbbing pulp of anger. On a Level 10 day, I feel like a single cell creature with no humanity, just existing in a universe of crazed hurt. There aren't many people I can talk about TN with, basically just you guys. People in my life don't have this kind of pain and I don't expect them to understand. A therapist however, might know how to listen and how to help especially if they work with patients living with high levels of pain. People kill themselves because of TN, I almost did. Take hold of every possible form of assistance you can get.
Colleen makes a good point about the meds. I had an unusual reaction to a few of the anticonvulsants. Even though I have never had a manic episode (before or since) my thoughts were jumbled, my emotions and senses were heightened, I couldn't sleep, eat, or sit still, I was emotional... I was really not myself. Although my neurologist felt the meds were safe, within a few days of stopping them, I was back to normal (in pain, but a pretty mellow person). Some of these same meds are actually given for severe bipolar, so I really wonder whether we know enough about their effects for different folks. It might be beneficial to see a psychiatrist just so they can review your medications and make sure they're safe and appropriate for you. They're supposed to make you feel better, and if they don't maybe you have other options.
hi: I take neurotin and tramadol (mild narcotic which is like putting a lil sweetner in the coffee...takes the edge off, but still feel it)...Ive been on this regimen for 12+ months, its just the wear/tear on my soul for putting up a tough front for sooo long and fighting through all my daily activities w/o throttling back...also I have been taking Clonezapan for anxiety for the last 9 months - take 1/2 in the AM and 1/2 after lunch if I am super anxious and then at sleeping time I can take 1 every hour until I take 3. Only reached the 3rd pill once, but if 2 or more are needed then I get a "hangover" from them - all mushy and slow in the AM...
Just now as I prep for a potential MVD in Jan, I am beginning to throttle back and even ask others for help. This sounds nuts, but its really NOT that easy for me to do. Its much much easier for me to just say "Im fine" (even though it feels as if someone jammed a letter opener up through my teeth out my cheek), smile and get busy, than to tell the truth and ask for help...its just the way I am programmed.
Thanks for all the great feedback
I am so independent that I never ask for help, so I understand that part. I have learned from this blasted disorder to take the help when offered and let people know you are having a bad day, even if they dont get it. Its hard when you are used to doing everything for yourself, but you have to step back and let people help.
I can only speak from my own experience, I find that being isolated, unable to function most of the time and really bad relapses of pain lately have made me realize that the never ending pain makes me angry, I am short tempered, I have mood swings, mostly anger, frustration and tears.
I am usually a happy go lucky very positive person but truth be told this is getting harder.
I feel we should ALL find things that help us.
Going to therapy can’t hurt, you may find it a positive way to share and give voice to all the feelings yoou are experiencing in a safe environment without burdening the ones close to you.
It’s a personal decision.
I personally would go to therapy before adding an anti depressant to the mix of meds most of us already take. But antidepressants can be very helpful if we are experiencing true depression.
It is perfectly normal for us to experience a level of anxiety with what we all go through with TN.
Glad to hear you are on clonanzepam, I was on a low dose years ago and it really helped.
In the end we must all find what works for us, and easier said than done we must all put aside our pride and independent ways and realize we’re not super human, dealing with TN or any chronic illness is extremely difficult.
I follow Buddhism, and find meditation helps, I also journal my feelings.
Actually I just finished a really great book called “How to be Sick” by Toni Bernhard it’s a really great read for anyone dealing with chronic illness.
Good luck to you, ((hugs))
Albee, I can also only speak from personal experience.
I had CBT a few years ago (before TN) for depression. I found it really helpful and I now find that it helps with dealing with TN. I don't think there's anything that can make things as easy as life without the pain but it helps me keep perspective on things and deal with some of the feelings.
I'm naturally very independent, don't like to ask for help and would like to pretend I'm fine. That all helps me keep going at work on bad days because I can put the pain in a box and keep going - I need to keep my job and because I'm a contractor taking time off sick isn't popular, so it's good to have a coping strategy that means people think I'm fine. But all of this doesn't make my life outside work any easier. What I learnt doing CBT helps me to keep talking to the people around me and letting them know what's going on. It also helps me to keep relaxed and less anxious and to let go of the guilt that I feel about not being able to do the things I used to do (chores, meeting friends etc). I'm not perfect, but things are a lot better than they would have been without the CBT, and when I do feel bad about the pain and how relentless it is I know how to make myself feel better.
I would say that therapy is something where you have to find the approach that suits you. The person I saw for CBT, who was actually a trainee, didn't spend a lot of time on why I felt how I did, it was about how to change how I felt and was quite practical. I found it really helpful but I know that not everyone does.
I hope you find something that helps you.
As Ruth noted, one modality that seems to do some folks a lot of good, is fairly often used in cases of Post Traumatic Shock Syndrome: Cognitive Behavioral Therapy is generally performed by a psychologist during a period of a few weeks. It is a set of mental and behavioral tools oriented toward gaining awareness of what's happening in your own thinking and actions, and taking back better control of your personal outcomes.
Whoever you work with professionally should also be conversant with medication side effects and their impact on emotional affect. There are some psychiatrists who do med management and also CBT. But they tend to be few and far between. But you don't want to work with a student who lacks training in these issues.
I wholeheartedly agree with Red. Having worked closely with psychologists and psychiatrists in a hospital and outpatient setting, you have to check them out as closely as you would your neurologist and neurosurgeon.
My doc at the pain management clinic I go to suggested that I see a therapist who specializes in dealing with people who have chronic pain. He said they could help with relaxation techniques to deal with the pain episodes. Haven't gone yet as I also, like you, don't want to add another appointment and another expense. I am sure it would probably do me some good. Just not ready to do it yet.
I have done pain management therapy and I can tell you it’s what gets me through every hard day or night , along with my relaxation app. I refuse to be drugged up and unaware of what I’m doing. I’m a single mom and I have a son so being aware is key. If I’m having a bad day I explain to my son and we have a plan to manage things easier for him and for me on those days cause as we all know, patience and a happy mom isn’t always something I can fake with this kind of pain. I hope you find something that works for you , it’s so hard to make others who don’t suffer with this condition understand the severity of pain we endure. Hang in there