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Old 04-15-2013, 11:23 AM #1
Mads Mads is offline
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Default Internal tremors - anyone else experiencing?

Please does anyone else experience internal tremors/shakes ?

Does anyone opinion what could be? Is it usual to experience tremors in PN or Erythromelalgia (EM) sufferers?

Apart from all the 'normal' PN symptoms and 'normal' EM symptoms i am getting frequent internal body/face tremors randomly during day and especially at night or when at rest. They are getting worse - now making me very nauseous . They are not anxiety attacks. I have suffered with panic attacks before and there is no hyperventilation, sweating chest pain dry mouth a feeling of dread, or a fear of dying . These are like a vibration -rippling fuzzy pulsing . Neurologist rather dismissive of my tremors as my MRI spine/brain, CT, bloods all negative. Having nerve conduction tests /EMG end of month.

Feeling so unwell. I dont need tremors too.

Thanks x
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Old 04-15-2013, 12:21 PM #2
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Default Internal Tremors

Imagine my astonishment, when yours is the first post i read. I had those internal tremors last week so badly they frightened me, and i called the Advice Nurse, only to be told they were imaginary~!

After laying down and meditating for a while, i remembered when i had them before, from an allergic reaction to an antibiotic. I hope yours go away, but consider any meds you might be taking. I have also learned that allergies can develop later, not only when first taking a med.

Best Wishes,
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Old 04-15-2013, 01:15 PM #3
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Please does anyone else experience internal tremors/shakes ?

Thanks x
Ever since I started Nortriptyline (Pamelor & other brand names), for my pain, I've had increased anxiety which is of a different sort than I've had before. Also, during occasions that make me more nervous, my hands are increasingly shaky (tremors). This could also be caused by Amitriptyline (Elavil).
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Old 04-15-2013, 02:43 PM #4
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Ever since I started Nortriptyline (Pamelor & other brand names), for my pain, I've had increased anxiety which is of a different sort than I've had before. Also, during occasions that make me more nervous, my hands are increasingly shaky (tremors). This could also be caused by Amitriptyline (Elavil).
Thanks guys - they are horrible arent they.Yes i wold have said medication but no. Mine started with this onset of PN 4 months ago. Im not taking any new medication .Still waiting for neurologist to make decision. So over the 4 months has got worse. Ive been tested for 'shaky' diseases and negative. Im sick of it being labelled 'stress'. I know what im feeling. Like my whole my alive buzzing fuzzy..... must be neuropathic???????????????????????????????

Question- can you have tremors with PN or EM ? Im frightened!!!!!!!!!!!!
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Old 04-15-2013, 03:10 PM #5
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I sometimes get internal vibrational type tremors in my abdomen before my intestines start acting up into cramping or diarrhea.

This was very severe when I had my drug reaction which caused angioedema + a lupus reaction. The angioedema causes the internal organs to swell, and this I guess causes compression of various nerves. It didn't happen all the time, just when I was going to get an "attack" of pain and diarrhea.

I think I mentioned angioedema to you before? This can be inherited or acquired (from ACE inhibitor drugs), or both, which my doctor now thinks I have. I have not had internal symptoms of vibration since I stopped that evil drug.

I am not surprised that doctors gave you a hard time...I think most of the time they have no clue about suffering at all!
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Old 04-15-2013, 10:15 PM #6
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I sometimes get internal vibrational type tremors in my abdomen before my intestines start acting up into cramping or diarrhea.

This was very severe when I had my drug reaction which caused angioedema + a lupus reaction. The angioedema causes the internal organs to swell, and this I guess causes compression of various nerves. It didn't happen all the time, just when I was going to get an "attack" of pain and diarrhea.

I think I mentioned angioedema to you before? This can be inherited or acquired (from ACE inhibitor drugs), or both, which my doctor now thinks I have. I have not had internal symptoms of vibration since I stopped that evil drug.

I am not surprised that doctors gave you a hard time...I think most of the time they have no clue about suffering at all!
Hello MrsD,
Thank you again so much. You are helping me more than any UK specialist. Im actually going to appointments and challenging them with your wisdom.Its amazing what a little knowledge can do - it really throws them lol!

I think angioedema must be the cause. As you know im getting progressively worse whilst they all 'make a decision' ,which is hard for them since my symptoms are apparently 'atypical' Ive gone to them with photos and pain diary asking them whether aside PN could I have erythromelalgia - which might explain my ''atypical PN symptoms' of redness, swelling flare ups extremities and now areas on body(face, legs, knees). My 'freckles' possibly arterial insufficiency as you say(will load photo of these asap for you).
Amongst other things, for 4 months my legs have been so swollen and stiff i can barely walk. Im far from stupid but my cognitive functions are much impaired from drugs and constant pain. I dont know how to think let alone what to do anymore!.
Stumped over the red flare ups they are now suggesting dermatologist.... in UK thats for skin complaints , which i have not got. Ive argued and managed to get visit to vascular specialist - next month. Only 3 EM specialists in entire UK. Do you think EM is possibility Mrs D? May i ask what you know about EM.
Thank you again for your concern for all of us and such compassion and kindness . You are truly some kind of guardian angel.

God bless you MrsD

PS: worse at night and around 4pm - cortisol thread - amazing. Thank you .UK specialists couldnt fathom why
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Old 04-16-2013, 06:21 AM #7
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Lightbulb

EM may respond to magnesium supplements.

Dr. Cohen, who we cite here often, has EM.

http://www.medicationsense.com/erythromelalgia.html

He uses some serotonin blocking drug that he imports from Canada. ( pizotifen (Sandomigran, from Canada))

He tried cyproheptadine which wasn't strong enough.
This information is here:
http://www.medicationsense.com/artic...treatment.html
under second line therapies

This suggests that EM is some disorder of serotonin levels. Serotonin is like bradykinin (in angioedema)...it is a biogenic amine which will cause redness and vasodilation.

Dr. Cohen has also used magnesium for his EM, for many years.

This link explains why EM is worse in the evening and at night.
http://www.medicationsense.com/artic...iorhythms.html
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Old 10-19-2013, 08:18 PM #8
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Originally Posted by Mads View Post
Thanks guys - they are horrible arent they.Yes i wold have said medication but no. Mine started with this onset of PN 4 months ago. Im not taking any new medication .Still waiting for neurologist to make decision. So over the 4 months has got worse. Ive been tested for 'shaky' diseases and negative. Im sick of it being labelled 'stress'. I know what im feeling. Like my whole my alive buzzing fuzzy..... must be neuropathic???????????????????????????????

Question- can you have tremors with PN or EM ? Im frightened!!!!!!!!!!!!
I have internal tremors that never go away and increasingly getting worse. They are most noticeable when I am at rest. First started with numbness and tingling in hands and feet but now I have numbness and tingling all over that "travels". Neurologist appt. in two weeks but I am worried that the same thing will happen to me. Can't sleep at night....getting tired of laying awake with this thing....very annoying....wondering if it is PN, MS, ES, PD (family history of this)......it is just nice to finally go to a place where someone else is experiencing same things so I don't feel crazy. Have dramatically destressed my life and my lifestyle is about as healthy as any could be (non-smoker, only occasional glass of wine, no meds even at 57, exercise daily for an hour plus strength training and yoga, eat organic, gluten free....etc...). Does anyone else out there have these symptoms that has been diagnosed with any of the above? Just want to be prepared for doctor's visit.
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Old 10-19-2013, 09:53 PM #9
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Hi
I think I have symptoms that are similar to what has been mentioned here. For 2 years now, I have had a feeling of "internal tremmor" or it feels like a vibration. I can only feel it, there is not actual tremors. I got very frustrated, I went to so many neurologist, and they treated med like I was crazy. This went on until I was finaly referred to a neurologist that specializes in neuropathy. He did repeat EMG and NCS all 4 extremeties, and I had a lot of abnormalities. He also diagnosed me with small fiber neuropathy. I also had the "swat test" that confirmed it. He said to me that the vibration and buzzing I am feeling, is all due to the sensory neuropathy. There is not actual tremors, but he explained that the damaged sensory nerves mis interpret messages, and gives me a sensation of vibration . This is especially bad with the small fiber neuropathy
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Old 10-20-2013, 09:32 PM #10
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Hi
I think I have symptoms that are similar to what has been mentioned here. For 2 years now, I have had a feeling of "internal tremmor" or it feels like a vibration. I can only feel it, there is not actual tremors. I got very frustrated, I went to so many neurologist, and they treated med like I was crazy. This went on until I was finaly referred to a neurologist that specializes in neuropathy. He did repeat EMG and NCS all 4 extremeties, and I had a lot of abnormalities. He also diagnosed me with small fiber neuropathy. I also had the "swat test" that confirmed it. He said to me that the vibration and buzzing I am feeling, is all due to the sensory neuropathy. There is not actual tremors, but he explained that the damaged sensory nerves mis interpret messages, and gives me a sensation of vibration . This is especially bad with the small fiber neuropathy
This is helpful to me. Going for my first appt in a few weeks. Did you experience numbness or tingling too?
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