The Stress from TN is reaking havok on my body!

General General TN & GPN (Old Site)
1

Hi everyone,

I've had TN1 since June, 2011. On 800 mg of Tegretol and 1600 mg of Neurontin. It's the Tegretol that really knocked out the pain at the beginning, but we had to keep going up to the present dose. I wish we could go up more. Of course, since I never really acclimated to the drug (sleepy, uncoordinated, can't talk correctly -- these are bad, not just minor; I sleep everyday from 4:00 to 7:00, then can't function until bedtime). It seems like after my second dose all side effects kick in. If I'm out during the day, say in a store, I bump into people and lose my balance. It's so embarrassing. And I hate that I'll never drive again.

What I'm getting at is I am losing my thick, beautiful hair; I have lost 15 lbs. plus my appetite; I am depressed; and most of all I am always afraid of a TN attack (my jaw - bilateral). The attacks come out of nowhere - they used to come with a trigger; the only trigger they come with now is cold weather and now the air conditioning (I have to go to bed with a blanket over my face), but pretty much they come out of nowhere. Also, I may partly have Atypical TN because I get aching, very hard aching, and most nights have to go to bed with ice packs (which are the only thing that help).

Also with bilateral TN I am not able to eat. Before it hit my right side I could eat normally on my right side without a problem. Then, BOOM, same terrible pain on the right side as the left and it continued on both sides. I hear that is very rare. So my husband and I puree my food -- how disgusting is that -- and I love to eat, used to love to eat. Now I have no appetite until dinner. I have two weddings coming up and I'm worried about how all of that is going to go down.

What I'm trying to get at is STRESS is obviously killing me, and I remember at my first visit with my neurologist she saying to my husband, "This woman can have absolutely no stress!! Do you understand?" HOW CAN YOU NOT HAVE STRESS WHEN YOU ARE CONSTANTLY IN PAIN OR WAITING TO BE IN PAIN??? I don't think she understands completely even though TN is her sub-specialty.

How do you keep from feeling stressed when you feel this way, when you keep reading that surgeries don't work, when your surgeon tells you that gamma knife could possibly help you but might leave you with a totally numb side even though it may not help you? How do you not feel stressed when you know that the medicine stops working after a few years? No one is telling me what happens after that!

Now that spring is here I'm going to try to start taking walks with my dog and I do crossword puzzles to try to keep my mind off of things. I don't know why my hair is falling out - I've heard that can happen from stress.

Does anyone else feel as frustrated as I do?

Barb

2

My heart hurts for you. I cannot give you the answers that will surely work, but I can tell you the things I have done to dissipate the stress or its affect on me. Prayer, deep breathing (literally I go back to Lamaze breathing), quiet rooms, etc. have helped some. Comfortable clothes, foods that offer me comfort (I know, not healthy, but when I am literally afraid to eat a helping of mashed potatoes does not seem to be such a bad thing), having my husband close to comfort me, etc. are helpful. Did I mention prayer? And letting others help me...resting when I can...posting on here and reading others' posts...I am new to the understanding aspect of this disease. I am still trying to know for sure what applies to me, how mine is unique, etc. Hell, I still can't tell for sure if it is a tooth or TN or both...:) But truthfully and seriously, the fellowship here and feeling less alone is priceless.

3

I think we all do Barb, to some degree or another. I just wanted to offer you a little reassurance, I have taken meds for 7 years now. Sometimes one does becomes ineffective but when I try another that can work. Stressing is so counterproductive to any TN sufferer. I have had to train my mind to one day at a time, as in truth no-one knows what tomorrow will bring. I hope for better for you : )

4

Barb, if stress is a significant issue as an initiator for pain, then there are some techniques which may be useful for you to investigate. Rational Behavioral Therapy and its earlier predecessor Rational Cognitive Therapy are not like psychotherapy or counseling. They are tool sets for gaining mastery of your own thoughts and feelings. A psychologist can teach you the tool set in a few weeks, and provide occasional monitoring or feedback reinforcement thereafter. A lot of folks with Post Traumatic Stress Disorder have gotten tremendous value from these tools.

FYI, although bilateral TN is relatively rare, it is certainly not unknown. Over a hundred of our members have pain of this sort. Likewise, have you talked with your doctor about the precise causes of your hair loss? I'd be more intuitively suspicious of medication side effects or secondary problems with diet deficiency than of a stress reactive pattern. You may be able to do something about that, with the proper workup.

I know you're having a terribly rough time, and I do not marginalize your pain and debility. What I try to do here at Living With TN is to focus on improving such conditions for as many as I can reach. That is in no way to discount your reality, Barb.

Go in Peace and Power

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

5

Hi Barb,

I cannot offer advice as I am new to TN but I wanted to let you know that I feel that TN is wreaking havoc on my body as well. I started losing a lot of hair months before my first attack and have been very sick since that first attack. Sometimes it is hard to know if it is the tegretol causing the symptoms or something else. My doctor is sending me to every specialist until we find out what is wrong but the process in Canada takes so long. Stress can cause your hair to fall out as well as menopause, thyroid and other conditions that you will want to talk to your doctor about. Have you had your B12 level checked?

I find the side effects of tegretol much more noticeable when I am in a store than when I am at home. Everything is overwhelming and your responses are slow, but it is important to keep getting out. I had a meltdown the other night because I having always been so independent and active, so not being able to drive is frustrating. I am getting tired of shopping with my husband. His idea of shopping is get w hat you need and get out of there. Shopping is so not just getting the groceries!

I am so sorry you are having such a difficult time but maybe a different combination of pills might want to be discussed with your neurologist.

Thinking of you, Collette

6

Does your insurance offer a psychologist or other practitioner who specializes in chronic pain? They might be able to give you some specific things to try. I'm not a big fan of the one I was sent to, but the idea sounds great and I'm looking for one who's a better fit.

7

Hi Barby,

I started a gratitude journal. I know it’s hard, when dealing with chronic pain, to find things to be grateful for - but it helps me a lot. Every day I add things I am grateful for and when I am feeling low I reread my entries.

I know this won’t take your pain away, but it’s a sure mood lifter!

Hope it helps!