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Experiences with
Brain arteriovenous malformation (AVM)
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DBS and madopar. Any one taking more than 12 -125mg tablets a day with a DBS. I would like to here from .
export
in
Cure Parkinson's
10 years ago
Does anyone have experience of deep brain stimulation used for SUNCT?
My father has been suffering from Sunct for the past 12 years. This has been mainly controlled by Lamotrigene and Indomethacin (please excuse spellings). He had an ONS fitted 3 years ago which also seems to have helped...............up until 1 month ago, he has been admitted to UCLH (previously he was
My father has been suffering from Sunct for the past 12 years. This has been mainly controlled by Lamotrigene and Indomethacin (please excuse spellings). He had an ONS fitted 3 years ago which also seems to have helped...............up until 1 month ago, he has been admitted to UCLH (previously he was
Sandra27
in
National Migraine Centre
10 years ago
Bursts of lightheaded feeling (feels like you got up too quick) but it happens randomly throughout the last 2 days.
Bursts of lightheaded feeling (feels like you got up too quick) but it happens randomly throughout the last 2 days. It wants to give me a panic attack. Im not sure why this is starting, I am thinking it is a progression from a brain tumor that I think I have even though last week I went to the Neuro
Bursts of lightheaded feeling (feels like you got up too quick) but it happens randomly throughout the last 2 days. It wants to give me a panic attack. Im not sure why this is starting, I am thinking it is a progression from a brain tumor that I think I have even though last week I went to the Neuro
aaironworks
in
Anxiety Support
10 years ago
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DBS! STN vs. PPN
I understand that DBS in the STN helps with resting tremors. My husband does not having resting tremors, (therefore DBS in the STN is not recommended) more issues related to rigidity, balance, and gait. I found a clinical trial in the UK that uses DBS in the PPN (Pedunculopontine nucleus) which targets
I understand that DBS in the STN helps with resting tremors. My husband does not having resting tremors, (therefore DBS in the STN is not recommended) more issues related to rigidity, balance, and gait. I found a clinical trial in the UK that uses DBS in the PPN (Pedunculopontine nucleus) which targets
PDadvocate1
in
Cure Parkinson's
10 years ago
Any one here from Kathmandu Nepal?
Hello i am amish shrestha from kathmandu. I had meningitis when i was 4 yrs old. I do have some e after effects of meningitis. Is anyone here from Kathmandu who also suffered from Meningitis. coz it will help a lot in many ways.
Hello i am amish shrestha from kathmandu. I had meningitis when i was 4 yrs old. I do have some e after effects of meningitis. Is anyone here from Kathmandu who also suffered from Meningitis. coz it will help a lot in many ways.
shrestha12
in
Meningitis Now
10 years ago
I was evaluated for DBS surgery last week. The doctor said I was not the best candidate because I don' respond to leva dopa well.
He also said the surgery was the best he could offer me. He said "perhaps" it would help with the dyskensia and dystonia I have. If it did I might need less medication and my speech would improve. ( leva dopa causes me to have a severe stammering and stuttering problem.). Either way, whether I have
He also said the surgery was the best he could offer me. He said "perhaps" it would help with the dyskensia and dystonia I have. If it did I might need less medication and my speech would improve. ( leva dopa causes me to have a severe stammering and stuttering problem.). Either way, whether I have
Eileen9
in
Cure Parkinson's
10 years ago
Does the after effects get reduced with time or it goes on deteriorating worrying about it ?
I am also very glad that i found this website. I have been reading your stories from past few hours. All of us are going through a very hard time. I think i was also contracted with some meningitis at the age of 4 when i had a serious headache. Docs said to my parents that they may have seen symptoms
I am also very glad that i found this website. I have been reading your stories from past few hours. All of us are going through a very hard time. I think i was also contracted with some meningitis at the age of 4 when i had a serious headache. Docs said to my parents that they may have seen symptoms
shrestha12
in
Meningitis Now
10 years ago
I need to change :(
I have a type of OCD that makes me worry about every single symptom i get. For example a head ache. My head goes into over drive and tells me I have a brain tumor or a pain in my leg is a blood clot. Im at the doctors probably once a week with something new. But no one listens. Ive been in the CBT waiting
I have a type of OCD that makes me worry about every single symptom i get. For example a head ache. My head goes into over drive and tells me I have a brain tumor or a pain in my leg is a blood clot. Im at the doctors probably once a week with something new. But no one listens. Ive been in the CBT waiting
sophieroxanne94
in
Anxiety Support
10 years ago
What procedure have you used to turn down your DBS stimulator?
I think my stimulator may be turned up too high because I started having some new type of dystonia after beginning lifting weights. What is the best way to make sure you have the right amount of stimulator amplitude or pulse width for therapeutic benefit?
I think my stimulator may be turned up too high because I started having some new type of dystonia after beginning lifting weights. What is the best way to make sure you have the right amount of stimulator amplitude or pulse width for therapeutic benefit?
AlabamaDoc
in
Cure Parkinson's
10 years ago
Neck & midline "tremors" developed after DBS for Parkinson's disease.
I had bilateral DBS for Parkinson's disease last year. For the first 3 months, I had absolutely no dystonia or dyskinesia. Then I started to develop a tremor in the back of neck and jaw associated with some dystonia of the back of my neck, middle back, and even abdominal muscles. Before DBS, I would
I had bilateral DBS for Parkinson's disease last year. For the first 3 months, I had absolutely no dystonia or dyskinesia. Then I started to develop a tremor in the back of neck and jaw associated with some dystonia of the back of my neck, middle back, and even abdominal muscles. Before DBS, I would
AlabamaDoc
in
Cure Parkinson's
10 years ago
Is there anyone with DBS taking Madopar or Sinemet and then added Azilect?
This question is for a friend who is not 'online'. He has DBS and on Madopar several times a day. His DBS specialist prescribed him Azilect, several months ago, which he took for about one week, but stopped because he perceived no benefit. His specialist told him that he did not give it enough time
This question is for a friend who is not 'online'. He has DBS and on Madopar several times a day. His DBS specialist prescribed him Azilect, several months ago, which he took for about one week, but stopped because he perceived no benefit. His specialist told him that he did not give it enough time
Norton1
in
Cure Parkinson's
10 years ago
Hey there
Hey, my name's Ben and on 02/06/2012 I had a
brain
haemorrhage. Turns out I have an
arteriovenous
malformation
in my
brain
(AVM), which is basically a nest of poorly developed blood vessels that can bleed at any time causing a stroke.
Hey, my name's Ben and on 02/06/2012 I had a
brain
haemorrhage. Turns out I have an
arteriovenous
malformation
in my
brain
(AVM), which is basically a nest of poorly developed blood vessels that can bleed at any time causing a stroke.
B_S_A
in
Anxiety Support
10 years ago
Has anyone had shingles on their face ?
Hiya I had a really bad flare last week and the most horrendous headaches and pain in my eyes ....I thought that maybe my biologic Cimzia was not working but yesterday a rash appeared on the side of my face and after itching my head all night I went to to the Drs today and it's turned out I have shingles
Hiya I had a really bad flare last week and the most horrendous headaches and pain in my eyes ....I thought that maybe my biologic Cimzia was not working but yesterday a rash appeared on the side of my face and after itching my head all night I went to to the Drs today and it's turned out I have shingles
claireyj
in
NRAS
10 years ago
I was diagnosed with hypothyroidism when I was 39 I am now 53 and still feel unwell also started the menopause same time.
Have not had a period since, just lately I have been so low tearful, no energy, pain and now pain in my buttocks which I think is sciatica which is so painful. My recent TSH levels were 14,, I normal run between 2.3 - 2.4 they have upped my levothyroxine to 175mcg daily, this was I week ago and I still
Have not had a period since, just lately I have been so low tearful, no energy, pain and now pain in my buttocks which I think is sciatica which is so painful. My recent TSH levels were 14,, I normal run between 2.3 - 2.4 they have upped my levothyroxine to 175mcg daily, this was I week ago and I still
darb
in
Thyroid UK
10 years ago
Viral Meningitis Awareness Week
This week we have our 2nd viral meningitis awareness week. Each day of the week we’ll be being vocal about the true impact of the disease and letting people know that we are here to support everyone affected. Viral meningitis can affect anyone. There is a misconception that viral meningitis is a
This week we have our 2nd viral meningitis awareness week. Each day of the week we’ll be being vocal about the true impact of the disease and letting people know that we are here to support everyone affected. Viral meningitis can affect anyone. There is a misconception that viral meningitis is a
MNClaireD
Meningitis Now
in
Meningitis Now
10 years ago
Shingles vaccine--Has anyone had the shingles vaccine while taking methotrexate? Is it okay to do so?
shareasmile
in
NRAS
10 years ago
Many Doctors are using these under or over the counter Do not rush out and buy.
Lymediseaseguide.org/rife-machine-therapy-for-Lyme-disease I first came across these devices in the late 70's in the form of radionics they go by biofeedback quantum healing. Computer versions can get right under my skin: They are illegal as one of the comments says. Doctors and other practitioners
Lymediseaseguide.org/rife-machine-therapy-for-Lyme-disease I first came across these devices in the late 70's in the form of radionics they go by biofeedback quantum healing. Computer versions can get right under my skin: They are illegal as one of the comments says. Doctors and other practitioners
carolr
in
Thyroid UK
10 years ago
Anyone know what turning the impedance down on my DBS will do ? Its three weeks since, as each day comes so dose the pain .
Could or would the impedance being turn down ,take three weeks to kick in fully . I do not know if my PD has moved on or it the DBS. yours EXPORT.
Could or would the impedance being turn down ,take three weeks to kick in fully . I do not know if my PD has moved on or it the DBS. yours EXPORT.
export
in
Cure Parkinson's
10 years ago
SUPPORT & ACCEPTANCE
SORRY FOLKS I NEED A RANT. I KNOW WE'VE TALKED A LOT BOUT LACK OF SUPPORT & UNDERSTANDING POST BI. IT NEVER FAILS TO AMAZE HOW BAD THIS IS. TO CUT A LONG STORY SHORT MY SISTER & I HAVE GOT TO GET MY DAD'S HOUSE READY TO SELL. SO FAR HER ONLY COMMENT IS TO SAY "I DON'T CARE ABOUT THE HOUSE". FOR THE
SORRY FOLKS I NEED A RANT. I KNOW WE'VE TALKED A LOT BOUT LACK OF SUPPORT & UNDERSTANDING POST BI. IT NEVER FAILS TO AMAZE HOW BAD THIS IS. TO CUT A LONG STORY SHORT MY SISTER & I HAVE GOT TO GET MY DAD'S HOUSE READY TO SELL. SO FAR HER ONLY COMMENT IS TO SAY "I DON'T CARE ABOUT THE HOUSE". FOR THE
Hidden
in
Headway
10 years ago
Not sure whether this is a scleroderma rash or Lupus...any advice...it's extremely painful
Hi All, I have Mixed Connective Tissue Disease and I have woken up this morning with a really swollen wrist - nothing new there - but I have a strange, wheel rash on top of it. Not ring worm as I have had this before and I haven't had any tick bites etc so that rules out Lyme disease. It is flat,
Hi All, I have Mixed Connective Tissue Disease and I have woken up this morning with a really swollen wrist - nothing new there - but I have a strange, wheel rash on top of it. Not ring worm as I have had this before and I haven't had any tick bites etc so that rules out Lyme disease. It is flat,
cass1984
in
LUPUS UK
10 years ago
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