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Experiences with
Mast cell activation syndrome (MCAS)
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Foods that "reduce" glutamate
As I am trying to reduce sedating Pregabalin dosage, I noticed that blueberries are a good food, not only OKAY but actually react to glutamate in a positive way. I don't understand all of the mechanisms but then I googled "foods that reduce glutamate" and found interesting info. One thing, for example
As I am trying to reduce sedating Pregabalin dosage, I noticed that blueberries are a good food, not only OKAY but actually react to glutamate in a positive way. I don't understand all of the mechanisms but then I googled "foods that reduce glutamate" and found interesting info. One thing, for example
wantokporo
in
Restless Legs Syndrome
2 years ago
RLS study
just completed phase 1 of an RLS study of a wearable e-stim device for RLS. For me, redults were mixed. Worked well on Right leg which has much milder symptoms than the left. The left did not respond well to the continuous stim. When I’ve used TNS in the past, a modulated wave form was more effective
just completed phase 1 of an RLS study of a wearable e-stim device for RLS. For me, redults were mixed. Worked well on Right leg which has much milder symptoms than the left. The left did not respond well to the continuous stim. When I’ve used TNS in the past, a modulated wave form was more effective
Hidden
in
Restless Legs Syndrome
2 years ago
How do you know your circadian rhythm?
This week I will be starting methadone, which may be the answer for me. If effective, it would give me a chance to change my sleeping pattern from 4am to noon to something more normal. My question is this: How do I determine what my current circadian rhythm is? It might be that I actually am still
This week I will be starting methadone, which may be the answer for me. If effective, it would give me a chance to change my sleeping pattern from 4am to noon to something more normal. My question is this: How do I determine what my current circadian rhythm is? It might be that I actually am still
ratfancy
in
Restless Legs Syndrome
2 years ago
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Pramipexole supplies
Festive greetings to fellow sufferers…… I have been having difficulties in getting my Pramipexole prescription lately. Pharmacy2U say their suppliers have said that they are out of stock of this drug and I now find many local pharmacies are too! I have been using Lloyds Princess Risborough just recently
Festive greetings to fellow sufferers…… I have been having difficulties in getting my Pramipexole prescription lately. Pharmacy2U say their suppliers have said that they are out of stock of this drug and I now find many local pharmacies are too! I have been using Lloyds Princess Risborough just recently
Johnnycomelately99
in
Restless Legs Syndrome
2 years ago
Targin and pregabalin
for the last three years I use Targin10/5 mg and 75mg pregabalin it works for 75% at the moment But the 25% what is left is very bad when in full blow nothing helps any more and life is not worth living. My question is would medicinal cannabis at that time help ?
for the last three years I use Targin10/5 mg and 75mg pregabalin it works for 75% at the moment But the 25% what is left is very bad when in full blow nothing helps any more and life is not worth living. My question is would medicinal cannabis at that time help ?
Aetje
in
Restless Legs Syndrome
2 years ago
I finally Connected the dots with symptoms of Insomnia, Internal trembling, anxiety and Tinnitus
I found that I have Histamine Intolerance and possible
Mast
Cell
activation
syndrome
. I'm sad about another diagnosis ( Hashimotos and TED) But HAPPY to have found the culprit! Google Histamine Intolerance and Anxiety. You'll be amazed.
I found that I have Histamine Intolerance and possible
Mast
Cell
activation
syndrome
. I'm sad about another diagnosis ( Hashimotos and TED) But HAPPY to have found the culprit! Google Histamine Intolerance and Anxiety. You'll be amazed.
JannSimpson
in
Thyroid UK
2 years ago
Has anyone got any experience in coming off Tocilizumab to start on Methotrexate?
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
sequeluk
in
PMRGCAuk
2 years ago
Frustration with Pregabalin
My appointment with Prof. Walker at Queen Square for RLS is not until February next year, so moving to opioids is not an option until then. In the meantime, since around July (after having been on Ropinirole for 15 years), I moved to taking 300mg Pregabalin of an evening ... which I then have to top
My appointment with Prof. Walker at Queen Square for RLS is not until February next year, so moving to opioids is not an option until then. In the meantime, since around July (after having been on Ropinirole for 15 years), I moved to taking 300mg Pregabalin of an evening ... which I then have to top
67Waterman
in
Restless Legs Syndrome
2 years ago
NEURO LIFE NOW SURVEY UK
To raise awareness of the lack of medical training and the poor treatment of RLS in the UK, it would be very helpful if all UK RLS patients would complete this survey by Neuro Life Now. It's run by the Brain and Spine Foundation and they receive funding for research and treatment. Share it on other platforms
To raise awareness of the lack of medical training and the poor treatment of RLS in the UK, it would be very helpful if all UK RLS patients would complete this survey by Neuro Life Now. It's run by the Brain and Spine Foundation and they receive funding for research and treatment. Share it on other platforms
Joolsg
in
Restless Legs Syndrome
2 years ago
Preparations afoot for my stem cell transplant
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
Scaredy_cat
in
MPN Voice
2 years ago
DOES ANYONE TAKE SONATA, LUNESTA, or RESTORIL for their RLS and if so, does it work for you?
Dr. Buchfuchrer's website list a host of drugs that have been prescribed over the years for RLS and their effects. Wondering if anyone takes either of these three for insomnia and RLS?
Dr. Buchfuchrer's website list a host of drugs that have been prescribed over the years for RLS and their effects. Wondering if anyone takes either of these three for insomnia and RLS?
Reb0013
in
Restless Legs Syndrome
2 years ago
Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
2 years ago
Peaceful legs
I have found peaceful legs taking 4 Madopar 100mg tablets spaced out during the day for Parkinsons and 2 Gabapentin 100mg tablets and 2 Tramadol 50mg tablets 1 hour before bed and found that I have no restless legs during the day and a peaceful night finger crossed and everything else hope this
I have found peaceful legs taking 4 Madopar 100mg tablets spaced out during the day for Parkinsons and 2 Gabapentin 100mg tablets and 2 Tramadol 50mg tablets 1 hour before bed and found that I have no restless legs during the day and a peaceful night finger crossed and everything else hope this
auldreekie18
in
Restless Legs Syndrome
2 years ago
PGT-A testing with few embryos
Hi all We are in the middle of our five day wait to see if we have any blastocysts. 3 eggs fertilised. I have a question about PGT-A testing but to help me answer it I will just share the most prominent bits of fertility history. We have been TTC 3 years. Experienced one early miscarriage (natural
Hi all We are in the middle of our five day wait to see if we have any blastocysts. 3 eggs fertilised. I have a question about PGT-A testing but to help me answer it I will just share the most prominent bits of fertility history. We have been TTC 3 years. Experienced one early miscarriage (natural
Skittles11
in
Fertility Network UK
2 years ago
Day 14 without Ropinirole, does it ever get better?
Hi all, Thought I'd leave a bit of an update here for others to see who are going through this. Day 1: The first night and the following day were not as bad as I expected, the RLS was maybe 5 out of 10, plenty enough to stop me from sleeping but it didn't spread to my arms and chest like it had been
Hi all, Thought I'd leave a bit of an update here for others to see who are going through this. Day 1: The first night and the following day were not as bad as I expected, the RLS was maybe 5 out of 10, plenty enough to stop me from sleeping but it didn't spread to my arms and chest like it had been
Hazuki
in
Restless Legs Syndrome
2 years ago
Weight gain on methadone?
I finally found a doctor in Sarasota who prescribes methadone. The plan is to stop Tramadol and switch to methadone. Will I gain weight - does it slow metabolism? I've been reading that some people have problems and I tend to gain weight easily. Anyone have experience? Thanks for your comments.
I finally found a doctor in Sarasota who prescribes methadone. The plan is to stop Tramadol and switch to methadone. Will I gain weight - does it slow metabolism? I've been reading that some people have problems and I tend to gain weight easily. Anyone have experience? Thanks for your comments.
Hidden
in
Restless Legs Syndrome
2 years ago
UNCLOG for eyes
hi folks. There is an incredible soul that developed UNCLOG mask with infrared to bathe the eyes Her name is Fifi She was incredibly helpful - referring Blepharitis , dry eye and anything else as an eye nurse who consulted with ophthalmologists for over three decades. company is http://www.unclogmask.com
hi folks. There is an incredible soul that developed UNCLOG mask with infrared to bathe the eyes Her name is Fifi She was incredibly helpful - referring Blepharitis , dry eye and anything else as an eye nurse who consulted with ophthalmologists for over three decades. company is http://www.unclogmask.com
2bear
in
PBC Foundation
2 years ago
Help from those taking Methadone
I need a shoulder replacement and is scheduled soon. I have been taking methadone to control my RLS. When I told my surgeon that I was taking methadone, he told me that he could not manage my pain. He said that anything that he gave me wouldn’t control my pain. He suggested to ask my neurologist or go
I need a shoulder replacement and is scheduled soon. I have been taking methadone to control my RLS. When I told my surgeon that I was taking methadone, he told me that he could not manage my pain. He said that anything that he gave me wouldn’t control my pain. He suggested to ask my neurologist or go
Merny5
in
Restless Legs Syndrome
2 years ago
HRT and RLS
Hello everyone, Just wanted some advice please. I have been able to reduce my dosage of Ropinirole to 1.5mg with the unexpected help of HRT. I would like to reduce further and although I need to up the HRT dose, which may help. I am considering trying Magnesium. Any advice would as always be gratefully
Hello everyone, Just wanted some advice please. I have been able to reduce my dosage of Ropinirole to 1.5mg with the unexpected help of HRT. I would like to reduce further and although I need to up the HRT dose, which may help. I am considering trying Magnesium. Any advice would as always be gratefully
21years
in
Restless Legs Syndrome
2 years ago
RSL and clonazepam
For me the ONLY thing that has worked is Clonazepam 2mg at night. Sometimes I have to take a second one during the night if the RLS is back. This has worked for me for years but I certainly worry about the addictive nature of benzodiazepines. But I’m not giving it up. I’m 73 now and I will take it for
For me the ONLY thing that has worked is Clonazepam 2mg at night. Sometimes I have to take a second one during the night if the RLS is back. This has worked for me for years but I certainly worry about the addictive nature of benzodiazepines. But I’m not giving it up. I’m 73 now and I will take it for
Hidden
in
Restless Legs Syndrome
2 years ago
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