Feeling Overwhelmed....

[sandymbme]

I went to the facial pain specialist today that on top of all my other problems I have a horrible case of tmj. He said that my cervical vertabrae were so far out of alignment that I had bone spurs on a couple of my vertabrae and my top vertabrae has nearly fused to my skull. He said that I have been clenching my jaw so much for so long that I have managed to completely wear off the ball part of the jaw ball and socket. Meanwhile my migraines are once again getting out of control and my overall pain level seems to be skyrocketing on a daily basis.

My husband means to be supportive by talking about how this will all get better in the next year, but it just makes me feel like he doesn't understand how difficult this really makes my life. I feel that much more isolated because my local docs have never even heard of my condition and frequently act like I'm just trying to get pain pills. They don't seem to understand that I am just desperate for some relief. If they told me that cod liver oil would cure me I'd drink it by the gallon. I think I would completely lose my mind if it were not for this forum. You guys make me feel like I'm not the only one losing control of their body.

I know I've seen a lot of posts on cervical spine issues, just wondering if anyone can shed some light on my newest complication.

Thanks!

[wireless]

Aww I've had jaw/neck issues that have been difficult, but nothing so severe. I hope that specialist has some good treatment options for you. If you can spend the money, I would suggest some massage/accupuncture type therapies. Regarding the regular docs, yeah that might not be worth it, getting such a lousy reponse. Perhaps if you ONLY said migraine then they would just give you a med for that? Also maybe they could give you Lyrica or something else besides a narcotic.

[lalalisa]

Hello,

I just wanted to chime in and let you know that I am hear listening. It sounds like you're having a really tough time right now and I can't imagine what it must be like to have so much pain on top of everything. I really hope things improve and that you can stay encouraged in the midst of such difficulty. Can I pray for you?

Take care,

Lisa

[sandymbme]

Thanks for the kind words. Yesterday was a really tough day. And Lisa, I'll take all the prayers I can get!

[dawn]

Hi,

I have had TMJ for 25 years. The pad slipped away.

If I chew gum, I am in trouble.

As for the migraines, a baby aspirin a day took care of that problem. Ask your doctor if you could try that maybe.

It is miserable. I have also had bouts of neck pain after an injury 26 years ago. I know how painful that is, do you have a soft

neck collar that you can wear to limit your movement?

Did they give you a mouth piece to wear?

As far as husbands, men, they are all the same. LOL

God Bless,

Dawn

[gertie]

I know what you are going through. I've had TMJ so many years that the dentist now tell me I have osteoporosis in my jaws. All this because I was undiagnosed for years because I didn't have a good dr. Has the dentist made you a mouthpiece to wear at night?

How often do you have migraines? I was having them every day so I went on a preventative which helped a lot. It helped me relax & sleep better also. Good luck!

[sandymbme]

My migraines have been my major pots symptom. I had one that lasted for 9 months earlier in 2007/2008 that started me down the road that led to a pots dx. I had been doing a lot better after switching jobs, but for some reason this has been a really rough week. It's scary because I felt like things were getting under control, and now for no apparrent reason things are getting really rough again. I've been taking my meds, trying to stay hydrated, staying off my feet and all I have to show for it is the largest weight gain of my life. Which makes everyone tell me how "healthy" I look, when I feel so fatigued and dizzy and confused it is all I can do to keep functioning.

I'm just so frustrated I want to throw the mother of all temper tantrums, but I don't have enough energy to pull it off!

[Jeannie32]

I certainly understand your frustrations ? I?m sure your husband means well.

I have a problem which is somewhat similar to yours. Reading your post the other day is actually what prompted me to go from a ?reader? on the forum to a bona fide posting member.

I found this site about a month ago while trying to research information on my own symptoms. At the present time, my doctors have not definitively diagnosed my illness as POTS ? although it remains a very strong probability. Unfortunately, I too have had issues with my doctors believing in my motives and my symptoms - but my issues go a little further...

Presently, I feel my husband of 4 years has been extremely supportive throughout my ordeal -- but I can NOT say the same of my other family members and friends. I?m sure this is, in part, because my symptoms and my diagnosis have not been cut and dried ? like a broken leg.

But as the weeks have passed, I have been being met with ever increasing unsympathetic attitude and rhetoric. I can assure you that this is not paranoia!

Please don?t tell me to ignore it. I can try to overlook the physical pain ? but it actually hurts 10 times worse to hear the whispers and sense the overall nonchalance about my illness. Plus, I worry that my spouse, in time, will develop the same attitude.

Any suggestions?

Jean

[Megan]

Jean,

Not many suggestions here. I still have a tendency to break down in tears after hearing people talk. (Lately, professors who believe I shouldn't be in college because of POTS) The only thing I've found is that if I actually end up passing out in front of someone who is being a piece of crap, they stop with the whispering, at least temporarily. Not ideal, but it did get a few of my extended family members to shut up after I collapsed at a family dinner and scared my 4 year old cousin have to death. I happen to be a very blunt person, so sometimes I just tell people what I think of their whispering when they have no idea what I'm actually going through. Also not a great approach, and not for everyone, I know. Sometimes sarcasm is what gets me through it. Actually this is a handful of suggestions... I don't know if they are useful, but know that you are not alone. It is definitely one of the worst parts of this disorder. I often want to scream "If I was bleeding from the head, would that make it legitimate?!"

Meg