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Mast cell activation syndrome (MCAS)
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will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
2 years ago
Newly diagnosed - Hashimoto's question
Hello all. Having lurked here for the best part of a month and learned tons of informative stuff, I’m posting to ask for some specific advice. I was diagnosed as hypothyroid five weeks ago, after a couple of months of feeling terrible – exhausted, nauseous, aching, generally ill. After lots of investigations
Hello all. Having lurked here for the best part of a month and learned tons of informative stuff, I’m posting to ask for some specific advice. I was diagnosed as hypothyroid five weeks ago, after a couple of months of feeling terrible – exhausted, nauseous, aching, generally ill. After lots of investigations
Oreo11
in
Thyroid UK
2 years ago
8th day without requip now what?
Today is day 8 off requip. It is the first night I had 3.5 consecutive hours of sleep. Hopefully I will continue to improve. Despite taking 1800 mg of gabapentin stretched out over 8 hours before bedtime, 100mg of tramadol at bedtime, and a few grams of kratom at midnight when I wake up with bad
Today is day 8 off requip. It is the first night I had 3.5 consecutive hours of sleep. Hopefully I will continue to improve. Despite taking 1800 mg of gabapentin stretched out over 8 hours before bedtime, 100mg of tramadol at bedtime, and a few grams of kratom at midnight when I wake up with bad
Asquiva
in
Restless Legs Syndrome
2 years ago
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Weaning off of Sinamet and Mirapex and onto Methadone
When I first started having RLS symptoms my family doctor tried to assist by giving me Sinemet and some other drug with alternating doses but it did not control the leg spasms so I started sleeping on the sofa and listening to the music of the Mystic Moods Orchestra. A fried had introduced me to their
When I first started having RLS symptoms my family doctor tried to assist by giving me Sinemet and some other drug with alternating doses but it did not control the leg spasms so I started sleeping on the sofa and listening to the music of the Mystic Moods Orchestra. A fried had introduced me to their
Tobias10
in
Restless Legs Syndrome
2 years ago
Progress ... ?
My doctor refused to give me the tests for iron deficiency that I asked for, saying that past tests showed my iron levels are fine. I contacted her again to explain how the tests I need now are different - copying out for her the relevant paragraphs from two research articles on the matter. I also sent
My doctor refused to give me the tests for iron deficiency that I asked for, saying that past tests showed my iron levels are fine. I contacted her again to explain how the tests I need now are different - copying out for her the relevant paragraphs from two research articles on the matter. I also sent
Desperate100
in
Restless Legs Syndrome
2 years ago
listening to music has transformed my sleep
I’ve suffered terribly from restless leg syndrome since I was a child. Only Having it diagnosed later in life. My RLS definitely comes and goes but when it’s at it’s peak it keeps me up in the night in levels of discomfort only a fellow RLS sufferer can understand. Recently I purchased some wireless
I’ve suffered terribly from restless leg syndrome since I was a child. Only Having it diagnosed later in life. My RLS definitely comes and goes but when it’s at it’s peak it keeps me up in the night in levels of discomfort only a fellow RLS sufferer can understand. Recently I purchased some wireless
LoulouPet
in
Restless Legs Syndrome
2 years ago
Just received the full copy of my blood test where I can see my TSI
My TSI is 1.20 (0.00 - 2.00) Does it mean that I ddi not have Graves and RAI is not right treatment for me? Thank you very much for your opinions.
My TSI is 1.20 (0.00 - 2.00) Does it mean that I ddi not have Graves and RAI is not right treatment for me? Thank you very much for your opinions.
femme12000
in
Thyroid UK
2 years ago
Go back on Pramaprexol?
I was on Miropex/Pramaprexol for 15 years for RLS until I augmented late 2021. I phased out the Pramapexol slowly as recommended by this site and Mayo Clinic(complete hell),as I began Gabapentin. I hated the side effects so switched to Pregabalin,which I also hated. I now take 100 MG of Tramadol
I was on Miropex/Pramaprexol for 15 years for RLS until I augmented late 2021. I phased out the Pramapexol slowly as recommended by this site and Mayo Clinic(complete hell),as I began Gabapentin. I hated the side effects so switched to Pregabalin,which I also hated. I now take 100 MG of Tramadol
SteveWess
in
Restless Legs Syndrome
2 years ago
buprenorphine for RLS
I have been trying doses of suboxone for RLS. for some people it is magic that gives them there life back. I took all the way up to 8 mg and it didn’t do much 🫤 I don’t get it. We are more experts than the doctors so my question is, does anyone have any clue why 8 mg of buprenorphine would not
I have been trying doses of suboxone for RLS. for some people it is magic that gives them there life back. I took all the way up to 8 mg and it didn’t do much 🫤 I don’t get it. We are more experts than the doctors so my question is, does anyone have any clue why 8 mg of buprenorphine would not
RC723
in
Restless Legs Syndrome
2 years ago
Clonazepam
Hi I'm still having a rough time with RLS despite my usual gabapentin and temgesic. My doctor has suggested trying clonazepam in combination with my existing medication and I wondered what experience my fellow sufferers had with it. I've tried other benzo sleeping tablets in the past but the RL always
Hi I'm still having a rough time with RLS despite my usual gabapentin and temgesic. My doctor has suggested trying clonazepam in combination with my existing medication and I wondered what experience my fellow sufferers had with it. I've tried other benzo sleeping tablets in the past but the RL always
puzzler1
in
Restless Legs Syndrome
2 years ago
Visit with new Hem/Onc Dr went well!
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Wewo01
in
MPN Voice
2 years ago
UTIs & D mannose
I'm currently having recurring infections- 2 different abx in just a few weeks. Due to see yet another gynae in early September re bladder prolapse. Tried D mannose before without success but maybe not taking enough?? Should it be 3 tabs every 3 hours- for how long? Thanks again as usual, Valerie
I'm currently having recurring infections- 2 different abx in just a few weeks. Due to see yet another gynae in early September re bladder prolapse. Tried D mannose before without success but maybe not taking enough?? Should it be 3 tabs every 3 hours- for how long? Thanks again as usual, Valerie
Portobello
in
PMRGCAuk
2 years ago
Bizarre aid in relieving my RLS symptoms
I have suffered severely from RLS for most of my life (I'm now 66). For the last few years I have been prescribed Ropinirole and Pregabalin, although the Pregabalin was stopped at the end of 2021. My symptoms have been unchanged for many years - sensations in legs, arms, shoulders and wrists; generally
I have suffered severely from RLS for most of my life (I'm now 66). For the last few years I have been prescribed Ropinirole and Pregabalin, although the Pregabalin was stopped at the end of 2021. My symptoms have been unchanged for many years - sensations in legs, arms, shoulders and wrists; generally
Niksles
in
Restless Legs Syndrome
2 years ago
Advice moving forward:
I currently take 300mg pregabalin but it only is about 60% effective, some nights it’s not effective at all, I also take cocodamol and sometimes clonazepam. I had already been on roprinirole and managed to wean myself off. I need some advice moving forward… I saw Professor Walker about a year ago -
I currently take 300mg pregabalin but it only is about 60% effective, some nights it’s not effective at all, I also take cocodamol and sometimes clonazepam. I had already been on roprinirole and managed to wean myself off. I need some advice moving forward… I saw Professor Walker about a year ago -
Drls
in
Restless Legs Syndrome
2 years ago
All in the Mind - hypermobility, ADHD, Tourette's
This morning, I listened to the latest
All in the mind
- and it was interesting. I was particularly struck by the associations made between mind and body - the seemingly very physical hypermobility syndrome and other issues which might be consider more on the mental health side. We have
This morning, I listened to the latest
All in the mind
- and it was interesting. I was particularly struck by the associations made between mind and body - the seemingly very physical hypermobility syndrome and other issues which might be consider more on the mental health side. We have
helvella
Thyroid UK
in
Thyroid UK
2 years ago
help with drinking 2 to 3 litres of water a day.
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
Kraskie1915
in
CLL Support
2 years ago
My daughter has chronic fatigue syndrome
My daughter has chronic fatigue syndrome. It seems to have developed folowing Glandular fever 9 months to her first symptoms. However after 3.5 years, the syndrome suddenly became very severe and caused disability of her arms and legs ( 7 months ago) . anybody else suffering with this?
My daughter has chronic fatigue syndrome. It seems to have developed folowing Glandular fever 9 months to her first symptoms. However after 3.5 years, the syndrome suddenly became very severe and caused disability of her arms and legs ( 7 months ago) . anybody else suffering with this?
Bonnie123456
in
Pain Concern
2 years ago
Taking Flecainide even when in Permanent Afib
Am in permanent Afib since feb 2021 and after taking my second dose of pfizer vaccine. Am on 2X90 mg Dilzem and 2,5 mg Nebilt/day. MY HR is 70-73 BPM 38% of the time, 66-69 BPM 33% of the time, 74-79 BPM 19% of the time and 62-65 BPM 2% of the time. To improve these results , I suggested to stop Nebilet
Am in permanent Afib since feb 2021 and after taking my second dose of pfizer vaccine. Am on 2X90 mg Dilzem and 2,5 mg Nebilt/day. MY HR is 70-73 BPM 38% of the time, 66-69 BPM 33% of the time, 74-79 BPM 19% of the time and 62-65 BPM 2% of the time. To improve these results , I suggested to stop Nebilet
Malhouse
in
Atrial Fibrillation Support
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
Medical miscarriage - is it safe to take again for the 2nd time? Any long term effects?
Hi, I’m having a horrible week and have misoprostol tablets to take tonight to help my miscarriage. I had them a couple of years ago, and obviously it’s just dawned on me whether it’s safe to have them again, and if there’s any long term effects which would stop me getting/staying pregnant? Feel very
Hi, I’m having a horrible week and have misoprostol tablets to take tonight to help my miscarriage. I had them a couple of years ago, and obviously it’s just dawned on me whether it’s safe to have them again, and if there’s any long term effects which would stop me getting/staying pregnant? Feel very
Catlady12345
in
Fertility Network UK
2 years ago
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