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View Full Version : not TN related ? but hoping for help


joy
09-01-2008, 12:54 AM
Hello weird pain folks

I just posted this on the neuropathy board but thought that some of you might have weird sensations in other parts of your head as well. I have a headache that is building up now and used to have several kinds of them, cluster, migraine and on an on but this is still yet someting different. I appreciate anyone who will give their take on this.
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I usually just search for anyone that has the same symptoms but at this time I would have to much trouble finding the information I need. I sure hope anyone that knows what I describe will give me their opinion of what they think may be happening. I know to not take anything I read as truth but I sure find lots of great starying places to get help on the boards.

My is Idiopathic Peripheral Neuropathy and I went to see my only neurologist that I've ever seen here in this town (went to Mayo in 02, nothing new found then) because I was having more numbness in my feet and legs and it was different from how it usually feels.

I have extensive things wrong in spine and hips and an MRI was done. Neurologist said that wasn't the cause of my new numbness. I felt like if I stand too long, it still possibly could be, I've been fired from my Pain Care Doctor for iffy reasons after I questioned things too much and he had shown me pictures of how bad it was for him to get the shots he did in, etc.

Back to my present problems now, I know my pn is widespread in hands etc already - I just finished getting my eyes tested and know the problems I already have but just a few weeks into new prescriptions etc I have been having fuzzy eyesight. I am checking my blood pressure and my sugar, I am not a diabetic. So far those numbers are acceptable or not unusual for me.

This could be from allergies I hope but my muscles in arms started feeling weird, like short jerky movements going on. I have fibromyalgia since 70's and this is usually on the back burner and other problems come first. Bu6t now my head my scalp , the area around my ears especially feel weird too. It is hard to describe. I do have meniere's disease and my ears do pop from fluid but I haave never had this sensation before even with my trigeminal neuralgia.

I hate such long draw out questions, statement as they make it difficult for someone trying to help but I'd appreciate if anyone would have anysuggestions or if you have had such things go wrong yourself if you'd tell me about it.

I have the beginning of a headache now also so thought this is getting out of hand possibly and here it is a holiday coming up. Any one have anything for me??

Many thanks if you made it through all my jabbering.

gene1950
09-01-2008, 03:01 PM
Hi Joy, I don't know if I can be of any help but some of the things you described I'm familiar with.

Where are the headaches located? My TN is on my right side and what i would describe as the headache now is about two inches above and to the right of my right eye. This area along with the rest of my face had very acute pain when I had my first episode with the trigeminal nerve going into a spasm. So I attribute the "headache" as part of my TN. some of the other things you mentioned such as the numbness in the feet and legs I attribute to the meds. That sensation often comes when standing and I lock my knees. The short jerky things I have experienced also and again just shrugged off as medication. I don't wish to come off as saying these are just TN things, but thought I would say I can identify and your not crazy.

Immo
09-01-2008, 06:11 PM
Hi Joy,

Same as Gene, I'm not sure how much help I am either - but I get sensations bilaterally across my scalp, sometimes pain. It's the weirdest feeling, plus I have what I called muscle spasms. That's where I get the little muscular jerks or spasms in my legs, arms & my eyes forcibly blink (as in like I am squeezing them closed for a couple of seconds). Those are all very weird to me.

My Neuro has "dismissed" them, as nothing came up on the MRI as "unusual" he just shrugged at me! Like Gene says, these things may be the result of our anti-seizure meds, but I simply have no idea unfortunately.

I hope you're able to find out.

Best Wishes ~ Kerry xx