The Aword

Oh, Helen thank you so much for your kind post. I'm so sorry that you are having that horrible buzzing! I think that you are right about muscle spasms. My old dr that left had me on soma. The new dr asked me to try not to take it. Well, since i ran out & he gave me none, this is when the buzzing started along with truly horrid muscle spasms! I see now also how I have to be so careful about SCS & pumps, steroid injs& surgeries! I dont think i could take this any worse. Willpray for you everytime i pray for the buzzing. I think we need God more than ever with all the drs getting afraid, the FDA considering making it even harder for us that must have narcotics. Every one of us had the tests, surgeries etc because we just wanted to feel better. Nothing has changed. We STILL want to get better! Hope you do get better!

just posted on another subject on the forum, re my friend who has AA....all the professionals who cause it assume we will get worn down and they (orthos, neuros) will all be fine,

my friend worn down by it at mo and has retreated to his bed for a while, 42 years old, 3 kids etc, always worked so hard..
so sad...we've been trying hard to get somewhere....i'm bit worn down by it too to be honest...but am here trying as ever

Helen, this vibrating, buzzing like im wearing a TENS but im not is starting to feel like its affecting my heart. The heart has its own electrical pattern & this " power" from spinal cord squeezing feels like its messing with my heart. Does this make sense other than how crazy i sound! But, my pulse is over 120 resting & pounding so hard like i just got scared out of my wits but has been doing it for months. I dont ever have to feel my heartrate, i can hear it! Thanks, is yours any better?

Hi
Yes I have felt it messing with my heart - I feel and hear my heartbeat all over my body and when I have attacks the only way I can describe what I'm feeling is to say that "it latches onto my heart" causing strange spasms!

You are not going mad, our symptoms are multiple and very complex and no two people are the same or progress the same. Every couple of days my attacks are causing very severe cramps all over my face, inside my neck/throat - then I can't see, hear or speak properly. At the same time the cramps are inside and around my chest, and inside my lumbar spine - really torturous!

Not much help, I know but good to be in touch with you all.

Best wishes Helen

Hi helen, I am so honored that you wrote to me when you are sufferring and going through so much! Thank you helen! Your description of the heart jerks & the heartbeats all over helped me!! Right now my brain is vibrating like nerve shaking and my blood pressure is so high for me & i think for the first time it is a csf pressure in brain because it cant get to area that is "arached out" from L3 caudally. Causing a pulsating superbad headache! Thank you for saying im not going mad! Do i just let this happen without seeing a dr? What kind of dr would i see? Neurologist, cardiologist because i havent been successful in finding any dr that knows about arach only that i have it. Did you see dr? Only pain dr that is a physical medicine & rehab dr that has treated my pain for 12 yrs, before i even knew about aa. He only knows that i shouldnt have injections or surgeries. And treats the pain, nerve symptoms too but all this is getting out of his realm of practice. The pain mgmt drs ive seen have been the most ignorant about aa. I will/have already prayed for you. I would love for us to stay in touch! Please? Can you walk? Have you fallen b/c you cant feel your feet? When you say flares do you mean that you get "honeymoons" (breaks from symptoms)? Thanks helen, you cant imagine how much it helps me that you know what i feel. I only wish that you Never had
to. Do you know what i mean? Ps: i put a "normal" picturre of sp nerves for all of us to look at & have faith that by a miracle we will have that again. Naeve? Maybe but i believe in miracles.

Hi (what is your first name?)

I get meds from my disbelieving GP. The last neurologist I consulted cost £5,000 and he withheld information about me, so I take whatever A does to me and consult doctors if I need to. When I lost my hearing recently I consulted an ENT specialist who unblocked my ears, explaining that due to chronic inflammation of the ear canal my ears can't function normally.

Can't walk far, but often feel dizzy and the constant cramps have caused the muscles in my torso neck and face to contract. During attacks my spine is on fire and it feels like a torniquet is twisting me up from inside!

I'm with you on miracles - don't give up!

Helen