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Brain arteriovenous malformation (AVM)
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The problematic 2nd dose of the day
Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as
Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as
jeeves19
in
Cure Parkinson's
7 months ago
DBS awake or under general anesthesia
I've been told that for my DBS operation I will be under general anesthesia. I'm just wondering what others have experienced. I like the idea of a good sleep and waking to find the operation over but I was under the impression that when done awake the patient can indicate when the probes are correctly
I've been told that for my DBS operation I will be under general anesthesia. I'm just wondering what others have experienced. I like the idea of a good sleep and waking to find the operation over but I was under the impression that when done awake the patient can indicate when the probes are correctly
gingerj
in
Cure Parkinson's
7 months ago
Collagen powder and increased stiffness?
Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but
Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but
1rocketman
in
Cure Parkinson's
8 months ago
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#1 Symptom Reducer
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
staceysack
in
Cure Parkinson's
8 months ago
Shingles.
I have always posted about my Afib and cardioablation. And all you nice people have helped me immensely. But now I'm going through another matter. Thirteen days ago I came down with shingles. The rash started on my back around my left shoulder blade and moved under my arm and onto my left breast. I can
I have always posted about my Afib and cardioablation. And all you nice people have helped me immensely. But now I'm going through another matter. Thirteen days ago I came down with shingles. The rash started on my back around my left shoulder blade and moved under my arm and onto my left breast. I can
mlp3434
in
AF Association
8 months ago
Travel vaccinations
I’m travelling to Bali in April and been recommended to have Typhoid, Tetanus and Hepatitis A boosters. Has anyone experienced any issues following these vaccinations please? Currently on 0.5mg Pred and no intention of reducing further until after the holiday!
I’m travelling to Bali in April and been recommended to have Typhoid, Tetanus and Hepatitis A boosters. Has anyone experienced any issues following these vaccinations please? Currently on 0.5mg Pred and no intention of reducing further until after the holiday!
Dorothy61
in
PMRGCAuk
8 months ago
DBS??
I’m seriously considering DBS. Would love some feedback from people who have had it done.
I’m seriously considering DBS. Would love some feedback from people who have had it done.
CostaVal
in
Cure Parkinson's
8 months ago
addicted to C/L?
i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if
i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if
limcheeese22
in
Cure Parkinson's
8 months ago
DBS. Did it improve your life as much as you hoped?
Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved
Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved
gingerj
in
Cure Parkinson's
8 months ago
Shingles pain
I've had shingles with continuing pain. Wounds like a burn and a scratch are taking ages to heal. I am older, 66, and I know this can happen. Any suggestions for tests I could ask for and is there any point asking for them. Best wishes Fiona
I've had shingles with continuing pain. Wounds like a burn and a scratch are taking ages to heal. I am older, 66, and I know this can happen. Any suggestions for tests I could ask for and is there any point asking for them. Best wishes Fiona
FinneUK
in
Thyroid UK
8 months ago
Is Low Dose Naltrexone (LDN) effective for Lyme disease?
Is Low Dose Naltrexone (LDN) effective for Lyme disease? Pharmacist Stephen Dickson, LDN Specialist https://youtu.be/teTB13xQsq0?si=twYmXSvKO6YlNElO
Is Low Dose Naltrexone (LDN) effective for Lyme disease? Pharmacist Stephen Dickson, LDN Specialist https://youtu.be/teTB13xQsq0?si=twYmXSvKO6YlNElO
Shewulf
Administrator
in
LDN Research Trust
8 months ago
I’m scheduled to have DBS surgery February 29 - if you have had DBS, is there anything you wish you‘d known beforehand?
I want to prepare mentally (and physically) for the surgery, and would appreciate any input from members of this community who have had the experience of DBS surgery. Thank you in advance. Wayne
I want to prepare mentally (and physically) for the surgery, and would appreciate any input from members of this community who have had the experience of DBS surgery. Thank you in advance. Wayne
Megafone
in
Cure Parkinson's
8 months ago
Kinder , Gentler and harmless Alternative of DBS
Seeking a kinder, gentler alternative, researchers from Korea's Yonsei University created minuscule magnets tagged with antibodies. The devices are known as nanoscale magnetic force actuators, or m-Torquers. These m-Torquers were injected into the subthalamic nucleus of mice with early- and late-stage
Seeking a kinder, gentler alternative, researchers from Korea's Yonsei University created minuscule magnets tagged with antibodies. The devices are known as nanoscale magnetic force actuators, or m-Torquers. These m-Torquers were injected into the subthalamic nucleus of mice with early- and late-stage
Farooqji
in
Cure Parkinson's
8 months ago
Next NoSilverBullet webinar on 12th of February: Dr Raul Martinez on “The role of Focused Ultrasound in the management of Parkinson's”
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7.30pm London time on Monday, the 12th of February. Dr Raul Martinez Will be talking to us about “The role of Focused Ultrasound in the management of Parkinson's Disease”. Please use the Eventbrite link below
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7.30pm London time on Monday, the 12th of February. Dr Raul Martinez Will be talking to us about “The role of Focused Ultrasound in the management of Parkinson's Disease”. Please use the Eventbrite link below
Michel0220
in
Cure Parkinson's
8 months ago
vaccinations
Hi advice from anyone please? I’m on holiday in Egypt the End of the month and wondered if anyone had there vaccinations ie. Tetanus booster, hepatitis A, Typhoid booster. Just not sure if I should go ahead and have them any help I would appreciate? 😊 also I’m on Benapali drug.
Hi advice from anyone please? I’m on holiday in Egypt the End of the month and wondered if anyone had there vaccinations ie. Tetanus booster, hepatitis A, Typhoid booster. Just not sure if I should go ahead and have them any help I would appreciate? 😊 also I’m on Benapali drug.
Swanfull
in
NRAS
8 months ago
shingles vax
I’ve tapered down to 5mg of prednisone over the last 8 months and so far my PMR is at acceptably low levels. I’ve been offered the shingles vaccine and wondering whether to have it. What is your advice?
I’ve tapered down to 5mg of prednisone over the last 8 months and so far my PMR is at acceptably low levels. I’ve been offered the shingles vaccine and wondering whether to have it. What is your advice?
Knarllyknees
in
PMRGCAuk
9 months ago
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory, a key cognitive process often impaired in PD. https://academic.oup.com/brain/advance-article-abstract/doi/10.1093/brain/awad433/7513222?login=false
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory, a key cognitive process often impaired in PD. https://academic.oup.com/brain/advance-article-abstract/doi/10.1093/brain/awad433/7513222?login=false
nednedned
in
Cure Parkinson's
9 months ago
Tingling
HiI have had three lots of brain surgery, the latest being a cranioplasty and clipping of an aneurysm. I am suffering with extreme tingling especialy down one side of my body. Has anybody else experienced this
HiI have had three lots of brain surgery, the latest being a cranioplasty and clipping of an aneurysm. I am suffering with extreme tingling especialy down one side of my body. Has anybody else experienced this
EHJF
in
Headway
1 year ago
Shingles
Anyone else ever had Shingles .First time ever..its so painful. I did contact the Gp straight away and they prescribed antiviral medication..I took this straight away ..suffering nerve pain as well and Dr prescribed me some gabapentin. So it's a few more meds to add to the tablets I'm.already taking
Anyone else ever had Shingles .First time ever..its so painful. I did contact the Gp straight away and they prescribed antiviral medication..I took this straight away ..suffering nerve pain as well and Dr prescribed me some gabapentin. So it's a few more meds to add to the tablets I'm.already taking
heathermc
in
MPN Voice
9 months ago
internal shingles
hi, I’ve been diagnosed with internal shingles and it’s the most painful thing I have ever experienced. I’m on my last day of Aciclovir, I’m taking paracetamol and codeine during the day and 3 amitriptyline at night, this has been going on for over a week. Is this normal? Any advice gladly accepted
hi, I’ve been diagnosed with internal shingles and it’s the most painful thing I have ever experienced. I’m on my last day of Aciclovir, I’m taking paracetamol and codeine during the day and 3 amitriptyline at night, this has been going on for over a week. Is this normal? Any advice gladly accepted
Mongoose123
in
PMRGCAuk
9 months ago
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