New to this site, here for information for my wife and support for myself

General General TN & GPN (Old Site)
1

Hello everyone. Though I am new member I have been reading and coming here since 10/10. Oddly enough I need some support but I am not the one with TN, my wife is.

Let me give you some backround....sorry this will be long.

My wife was first diagnosed with TN in 10/10. She was 28 at the time. She is also diagnosed as idiopathic autoimmune since the age of 12 which complicates things.

She first saw the neurologist back in 10/10 who quickly diagnosed her with TN after listening to her symptoms and prescribed Lyrica. After she consulted with her allergist he told her that taking any anticonvulsives with her autoimmune condition would be very risky. After a few days shocking pain in her face was so bad that she was up all night crying and finally the next dayI was able to convince her to go to the ER. (let me not get into how rude the ER doctor was telling her "we cant treat TN just take the Lyrica")

Anyhow they gave her morphine which helped with the pain as she is allergic to other painkillers such as vicodin and percocet....if I recall correctly I think she said something about being allergic to the sulfates. Anyhow, she spent 3 days in the hospital where they tested her for shogrens, lymes disease and gave her an MRI to see if she had compression of the nerve. Unfortunately she is allergic to contrast (and a million other things) so the images may not have been as good as they could be but they came back showing no compression from the artery.

I should also mention that they did a blood lab and found her vitamin D levels to be very low, almost non-existant. She now taked 2500iu of vitamin D daily. We hoped this was what caused her TN but she wasn't so lucky as it came back 7 months later.

They released her with a course of prednisone and some morphine pills, she took the prednisone and took the morphine pills when the pain got bad.

After she was released she went to the dentist to have x-rays taken to check for an absess which also came back negative. She then went for acupuncture for the TN (she has been going for acupuncture for her allergies for years now). She called me after her appointment and told me that after the third needle was inserted the pain went off like someone turned off a light switch. I immediately broke down in tears as I was so happy for her. It really breaks my heart to see her is so much pain. Anyway, she was pain free for hoursbut the pain slowly came back but never as intense as the first time. She continued to go for acupuncture 3x a week for several weeks, every time she would be pain free longer and longer until finally the pain did not return. She continued to go for acupuncture for allergies but they did only 2 points for the TN. (Apparently they cannot do all of the allergy points with all of the TN points together)

6/11 her pain returned, not as bad as the first time but significant enough. She went back to acupuncture to do the full blown TN treatment and again like the first time after several visits the pain became less and less until it was gone. She continued to go 1x a week for allergies but only 2 points for TN.

9/6/11- her pain returned again and she is going for acupuncture again for the full blown TN treatment.

A little about me,

I am 31 and an only child. I lost my dad when I was 17. My wife, mother and grandmother are all I have . I am here to share my knowledge & experience and I am also here for giving and receiveing support. My wife does not like forums and refuses to keep doing research but I love her and I am willing to do research for her until my eyes and fingers bleed. I have had several major medical problems myself, 4x my lungs collapsed spontaniously, each was a week in the hospital where my wife sat by my side day and night and slept in a chair. I also had my thyroid removed in 2007 because I found a lump that turned out to be malignant. Again my wife sat by my side and did everything for me.....now its my turn to be there for her.

For myself, I am here because it sickens me to see her like this and I dont know what else to do. I literally get so upset that I get nauseous, cannot eat, get hot and cold flashes and butteryflies in my stomach everytime she puts her hand on her face. I cannot enjoy doing anything because I know my wife is in such miserable pain. I cannot enjoy my life and I am constantly thinking about her. I can see that I am irritating her by constatly asking if she is ok, or needs anything.....does it hurt more or less and a thousand other questions and suggestions...I just want to help any way I can.

OK sorry for the book I just wrote, I am going to stop for now but that is the jist of our story. I see many others here affected the same way by this terrible illness. At least I know people on this forums understand our pain, I am glad I found this site.

2

Welcome -- I got my TN 10/10 also.... the best thing besides coming here is the book "Striking Back" by Dr. Casey.... It really has good sections on what you are going through versus what she is going through and how you can feel more helpful! I know my new husband is at a loss when I just grab my face and stop talking or eating.... he wants to FIX it for me.... it is hard for all

Lastly, you might look on here to see if there is a support group in your area - they are also for caregivers

Kimberly

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@Kimberly,

I want to "FIX" it for my wife also. As I am a mechanical engineer my life revolves around solving problems and fixing things..so naturally I want to try to fix her also. I know mechanical engineering is not biology or anything medical. Luckily my wife also studied engineering and has taken all classes to become an RN so she knows more then I do when it comes to anything medical. She stoped short with clinicals because we moved and now we need her income to pay our mortgage. Luckily she works from home so when her TN is acting up the only one around to see her is our dog.

@Jackie,

Forgiving my wife is not a problem, I am not upset with her for being irritated. If I were in her shoes I would think I'm annoying also lol. I deffinately ask too many questions...but again its just that I feel helpless and angry that I cannot do anything.

Its really demoralizing, with all my knowledge, anger and guns (I collect guns) there is not a single thing I can do to help her.

4

Many of us use this forum to vent and often we see that lack of family support is a problem. Your wife is lucky to have you.

TN aside, I imagine once she took care of that vitamin D problem her mood and energy likely picked up. Better to help fight her autoimmune issues.

I think one of the hardest things we encounter is finding the right cocktail for the right person. Even though she has so many restrictions, there are a wide variety of medications out there that are used to treat TN. Most GPs instantly go to anticonvulsants because thats what they learn when they cover TN in school (likely for about 1 chapter amongst 100's of books)

Keep reading, researching and hopefully you will find something for your wife. In any case you will definately get a tremendous amount of support.

Elaine

5

Thanks for the kind words Elaine. My wife is also a vegetarian so besides the vitamin D deficiency I am sure there are other nutrients she is lacking like protien, though she does eat protien bars all the time. She is not vegan so she does eat cheese, eggs and has limited amounts of dairy. She says she will eat anything that didn;t once have a face lol.

I have done my homework and I know that besides anticonvulsants many times anti-depressants work. Many people even say xanax helps. Unfortunately she is one who doesnt want to take drugs. Even the morphine she only takes when the pain is so bad that she is on the verge of crying. She has made it clear to me that she will never take anticonvulsants or anti-depressants nor will she ever have any of the procedures like MVD or anything that will destroy the nerve like gamma knife or cut the nerve (she is very strong willed lol). She wants to find the cause not treat or mask the symptom....unfortunately most doctors just treat symptoms and its hard to find one who actually cares to fix the problem by finding the cause.

As you said she does have many restrctions and I understand why. I have been to the hospital with her countless times because she gets very nasty autoimmune urticaria.....hives all over her body the size of footballs. They have pumped her full of countless amounts of steroids....and she has been in anaphylactic shock several times. She is very allergic to pollen, aspirin, red die#3, bee stings, and sulfates just to name a few. She is even allergic to her own antibodies, so much so that when they tested her she got a worse reaction to her antibodies then to pure histamine. Her allergist, who is head of allergy, immunology and infectious disease at Miami University Hospital even started a case study on her. She is such a bundle of joy LOL!!!

anyhow, thank you and everyone for your support.


Elaine Iles said:

Many of us use this forum to vent and often we see that lack of family support is a problem. Your wife is lucky to have you.

TN aside, I imagine once she took care of that vitamin D problem her mood and energy likely picked up. Better to help fight her autoimmune issues.

I think one of the hardest things we encounter is finding the right cocktail for the right person. Even though she has so many restrictions, there are a wide variety of medications out there that are used to treat TN. Most GPs instantly go to anticonvulsants because thats what they learn when they cover TN in school (likely for about 1 chapter amongst 100's of books)

Keep reading, researching and hopefully you will find something for your wife. In any case you will definately get a tremendous amount of support.

Elaine

6

Wow! That's a whole can of worms. I hope someone gives you an honorary doctorate at the end of this journey!

I am ATN and recently switched from anticonvulsants to Nortrypteline (sp?). You should check out this drug family. While it is widely known as an antidepressant, that is not its ultimate purpose. It is also designed as a pain pill (not sure what is designed and what is the happy accident - unless both are by design). I have had great success for both problems.

I can't remember if I read this in "Striking Back" on saw it on the Dr. Ken Casey video that was on this site - but I learned people with chronic pain actually experience a chemical change in the seretonin levels in their brain. The change is more or less the same thing chemically, as what happens to a person who experiences depression - Chronic Pain can induce a chemical depression.

I don't know if your wife refuses anti-depressants because of the stigma, but if she does I suggest you focus some of your energy in this area. Perhaps if she realized this was an actual chemical reaction she would be more accepting of a drug such as Nortryp. or a similar drug in its family.

If your wife's primary goal is alternative non-drug treatment there has been some postings / information regarding TN Nutrition. The one I had looked at and made most sense to me focused on gluten reduction. There is also a diet in the group page that focuses on lowering saturated fats. Not tried or tested by me so I have no feedback for you on this.

Unfortunately TN is scary, never ending and PAINFUL. In the end your wife may have to compromise her position and opt for a drug / surgical treatment that she may not like, but feels the most comfortable with.

That's my food for thought. Should keep you busy for a long time.

Elaine

If someone out there sees an error in my medical interpretation of the 'chemical depression' - PLEASE correct it immediately.

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I'll offer a minor correction, as you requested, Elaine. The Tri-Cyclic antidepressants act by suppressing a chemical channel that is also used in common by the pain registration systems of the Central Nervous System (I believe it is either Sodium or Calcium, though right now I'm tired from 10 hours in the air today and I flat don't remember which). Nortriptyline and Amitriptyline are among this class. On the other hand, while seratonin levels may indeed be affected by chronic pain, the SSRI (Seratonin Re-Uptake Inhibitors) act quite differently than the tricyclics. In most people SSRIs are not directly effective against pain even when they help with the co-morbid depression which sometimes sets in.

In any discussion of this sort, the authority most important will be a neurologist familiar with this specific patient from in-person interview and interaction. And for information, there is no longer any real "stigma" attached to anti-depressant drugs. If I recall the statistic correctly, over a quarter of all American and European citizens will use such a medication at some point in their lives.

Go in Peace and Power

Red

8

Thank you for the clarity Red. And in regards to the "stigma" - I was hoping there isn't one. I absolutely agree with you that there really isn't or shouldn't be one any longer as it IS very commonly used. On the other hand, I didn't want to make an assumption as to why Steve's wife is against Anti-depressants but is willing to try other medications so I mentioned it.

Talk to you on a future post,

Elaine

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So glad you are here. You are a pretty special guy and my hubbie is also my strength as well as this board. Lately the computer is worse than the phone. I am paying for a concierge dr and my gain is mainly time. Accupuncture didnt work for me 3 years ago but his office is looking for facial massge therapy. You can email or call and i will give you who hs helped so far. You are both very young for so much pain. I hope I can help.