Hi everyone. I’ve been awake for 40 hours straight I’ve tried and tried to sleep but have so much adrenaline I can’t. I’m starting to panic because I feel really unwell and severely struggling it’s scary. Is this normal with pots?
Hi everyone. For context I have moderate-severe M.E, bed bound with multiple conditions alongside M.E such as POTs MCAS hEDS endo etc. I have dentist booked it as I have 1 dead tooth and 1 infected tooth (due to being bed bound leaving house for appointments/check ups so difficult and has led to neglecting my body/teeth). I’m extremely nervous as even typing a message right now is enough to send me into a flare and PEM crash, has anyone got any advice on best things to do before/after extractions in terms of PEM crashes/flare ups. And any advice on if you’d opt for inhalation sedation or IV sedation as I’ve been offered both. Thank you guys.
Hello angels. I was just wondering what’s the best things that have helped you girls with endo pains during period? I’ve honestly got nothing left. I’ve tried so much things but due to unfortunately having multiple conditions such as MCAS, POTS, hEDS, M.E etc I’m so reactive to medications and the side effects never worth it to me as doesn’t help me with the pain at all. I don’t tolerate any forms of birth control at all, only thing I’ve managed to tolerate is bioidentical progesterone. And pain killers have been impossible to find ones that work especially without reactions. Could anyone share what meds/things have helped? And any other tools or things alongside that have helped too I’m open to anything and everything nothing is too out there for me I’m desperate! To note I have stage 4 deep infiltrating endo, adeno and pcos. Much love xxxx
Hi everyone. I found out recently I have systematic candida overgrowth and it’s quite aggressive. I have been diagnosed with endometriosis adenomyosis PCOS M.E/CFS POTs hEDS and the list goes on. I’m not saying it’s all down to systematic candida but I just want a glimmer of hope to know if you treat it you can improve some potential symptoms that maybe I didn’t realise were due to systematic candida and I’d like to hear what helped people and how it helped them? I’m going to be working with someone and also really scared/nervous as my baseline is so low. Don’t want to feel worse but also if can hear how much better you feel once overcome maybe will help!
Hi everyone. Does anyone have both endometriosis and MCAS? I’m really really struggling to find affective pain relief for my stage 4 endo with having MCAS. I seem to not tolerate anything or feel worse and not even worth the reactions as it still doesn’t help the endo pain! I’m so desperate 😭
Hey everyone. I’ve tried methyl free b vitamins and literally start 1/4 of a dose and still experience extreme nausea, wired and palpitations doesn’t anyone else get this?!
Hey everyone. I had to stop ketotifen 11 days ago due to bad side effects but now since I’ve stopped I’ve had the worst insomnia. Several hours to fall asleep finally sleep 3-4am only to wake up 6-7am and unable to sleep for hours. Has anyone had this?
Hi everyone, I have 8 conditions including POTs MCAS M.E and hEDS. I have 55+ daily symptoms and I’m bed bound. I have had a follow up today with my POTs MCAS specialist and would just like some advice. I communicated that: I have internal vibrations 24/7, super sensitive nervous system, stuck in overdrive/hyperarousal, adrenaline dumps, restless legs, spikes/drops in HR (tachycardia to bradycardia), internal heat/feverish. These are mainly the biggest contributors to my insomnia and make sleep impossible. I of course have many other symptoms but today I was trying to emphasise how much these impact my quality of sleep as it takes hours to all asleep I barely fall asleep 4-5am sleep couple hours then constantly awake. Based on his suggestions I’ve trialed ketotifen made me extremely nauseous and triggered POTs episodes, I trialed fexofenadine gave me worse restless legs, I do compression socks, electrolytes etc. Today he suggested I trial Luteolin as a mass cell stabiliser and to trial clonidine over guanfacine for all the wired/adrenaline symptoms as the clonidine I can start on a lower dose. However by concern is I have low blood pressure and bradycardia so as much as I need help calming the wired/adrenaline symptoms I also don’t do well with things that drop my BP and HR. So I was trying to ask if can be prescribed midodrine alongside? And he’s wanting me to do ultra low dose naltrexone. I am new to all this as recently was diagnosed so I just need some advice and insight from people with experience please as I’m desperate for relief and improvement. Thank you
Hi everyone, I have 8 conditions including POTs MCAS M.E and hEDS. I have 55+ daily symptoms and I’m bed bound. I have had a follow up today with my POTs MCAS specialist and would just like some advice. I communicated that: I have internal vibrations 24/7, super sensitive nervous system, stuck in overdrive/hyperarousal, adrenaline dumps, restless legs, spikes/drops in HR (tachycardia to bradycardia), internal heat/feverish. These are mainly the biggest contributors to my insomnia and make sleep impossible. I of course have many other symptoms but today I was trying to emphasise how much these impact my quality of sleep as it takes hours to all asleep I barely fall asleep 4-5am sleep couple hours then constantly awake. Based on his suggestions I’ve trialed ketotifen made me extremely nauseous and triggered POTs episodes, I trialed fexofenadine gave me worse restless legs, I do compression socks, electrolytes etc. Today he suggested I trial Luteolin as a mass cell stabiliser and to trial clonidine over guanfacine for all the wired/adrenaline symptoms as the clonidine I can start on a lower dose. However by concern is I have low blood pressure and bradycardia so as much as I need help calming the wired/adrenaline symptoms I also don’t do well with things that drop my BP and HR. So I was trying to ask if can be prescribed midodrine alongside? And he’s wanting me to do ultra low dose naltrexone. I am new to all this as recently was diagnosed so I just need some advice and insight from people with experience please as I’m desperate for relief and improvement. Thank you
Hi everyone. I have severe M.E along with POTs MCAS hEDS and more. I’m trying to find a specialist or someone who understands all my conditions especially M.E POTs MCAS and can suggest/prescribe off label medications such as mestinon, low dose abilify, memantine extended release, low dose guanfacine, low dose trazodone etc. I am bed bound last 6 years and only 30 I can’t take it anymore, I’ve seen a lot of off label medications be used with a lot of people reporting improvements and I’m desperate to try. Can anyone advise or recommend how to see someone in the UK for this? Thank you
Hi everyone. I have severe M.E (along with POTs MCAS hEDS and more). I’m trying to find a M.E specialist or someone who understands M.E and can suggest/prescribe off label medications such as mestinon, low dose abilify, memantine extended release, low dose guanfacine, low dose trazodone etc. I am bed bound last 6 years and only 30 I can’t take it anymore, I’ve seen a lot of off label medications be used with a lot of people reporting improvements and I’m desperate to try. Can anyone advise or recommend how to see someone in the UK for this?
Hi I’ve taken ketotifen and experiencing extreme nausea but I feel so drowsy too. I feel like I’m going to throw up and panicking. Is this normal? I only take 0.25mg?
Hi everyone I know this is a LDN page but was wondering has anyone worked with specifically someone who’s specialised in M.E/CFS and has prescribed you LDN? I’m trying to find a good specialist and struggling to find one, I have a POTs and MCAS specialist (and a Endometriosis specialist) both recommended the LDN. But I’m just worried that with neither specialising in M.E that those symptoms/that condition won’t get better. Was just curious if anyone had any advice at all!
Hi everyone. Wondering if anyone with M.E/CFS based in UK has had any success with a specialist (I’m bed bound so would have to be online appointments). I have a MCAS and POTs specialist and been prescribed ketotifen antihistamines and LDN as well as a endometriosis specialist but I don’t have a M.E/CFS specialist and have been constantly let down by the NHS since my M.E/CFS diagnosis back in 2019. I’ve only ever been seen by one specialist that was and all he did was make me feel like it was from trauma, offered no help/solutions and have drastically declined since then with no real support or help. Really desperate to find someone well versed and who has more of an open mind and personal approach. If anyone has any positive experiences with any specialists via NHS or private they can recommend or vouch for please message/reply. Thank you.