Mikayla

Thanks Momtogiuliana, That is helpful , I appreciate you sharing that info.

Thanks So much Macho 🙏 The more I research it the more scary it looks. The online recommendation is not to take it for more than 3weeks and it says long term use can cause bone weakening in the elderly. Probably good you stopped taking it! I hope you found other ways to improve your symptoms. I might still give it a try but still not sure.

Hello, I have Pots, CFS, ehles danlos, depression, anxiety. I have a tendency for very low blood pressure and resting HR... My hr only jumps between 30 and 50 bpm on standing but I find the dizziness, fatigue and brain fog very debilitating most of the time. I have tried a lot of things but not really improving. I tend to have bad side effects to all meds I have tried. I have been prescribed fludrocortizone recently. I have a history of anorexia and am very concerned about the listed side effect of weight gain and Edema. I am interested to hear how common these side effects are and how long they take to come on... And also wondering if there are bad withdrawals if I decide to stop taking it? I would appreciate another perspective on it besides my doctor.. she doesn't realise how bad it is to take something that ends up making me worse when I am already feeling terrible. I hope it's ok to ask this here. I am just feeling alone, frustrated and confused and scared of side effects making things worse Thanks everyone. 🙏 Mikayla

that sounds sweet to have a yawning companion 😄 i did not know birds could yawn!

Thanks Pistol for all the info you shared... You are probably right about meals because i have been having larger meals and not snacking much lately. Since i always feel tired after eating i tend to put off eating as long as possible to try and get things done. So then by the time i eat i am more hungry and have a larger meal to make up for it. Lately i have been skipping breakfast to try and get things done... And there is so much info on intermittent fasting benefits I have been adopting that rhythm. It works well for me as i usually have no appetite in the morning so it is easier for me to avoid food. I am also a creature of habit and i can be funny with food so it may take me some effort to change my patterns.... To be honest i have a history of annorexia (which i think is part of developing POTS in the first place)... Though i am managing my eating disorders and weight now it still causes me anxiety to make changes. I really appreciate your suggestions and will use this as inspiration to look at my habits and change them with self compassion. The learning never stops hey! Thanks again. 🙏

Thanks so much for all your responses.. It is nice to know i am not the only one and that it is ok to let the yawns happen when they need to. It is amazing how many things end up being related to dysautonomia 🙃

Hi 🌻... I just searched for a post about yawning and the most relevant one was from 10years ago so i wanted to start a new thread and see if anyone had similar experiences or information about yawn attacks. I have these bouts of excessive yawning that tend to hit me after lunch and sometimes at other times. I tend to yawn for at least 10mins straight.. And big loud yawns feel necessary. I have to lie down and my eyes start watering quite a lot. It seems like it might be helping relieve my fatigue somehow..... like it might be to do with needing more oxygen? The previous yawning comment thread had someone mention it might be bad to yawn a lot? I dont feel like it would be good (or easy) to suppress it but if there is evidence that it is bad for health then i will certainly try to stop indulging the yawns! This has been happening for quite a long time but i only recently realised it is probably something to do with my dysautonomia. (I am diagnosed with POTs and have quite low blood pressure and resting heart rate.) I am interested if anyone has any info or experience to share about yawns? 🙏✨

Thanks heaps everyone, I will let you know how it goes ... ❤

Thankyou both for your responses... I feel so much better having people who understand my worries and share experiences. Sincere thanks. It eases my worries that i can easily skip doses and cut the tablets, the instructions made it sound more scary. So will give it a go! I hope it does help with fatigue... I feel like my chronic low blood pressure (today 81/61 with HR rise of 40bpm on standing) must be at least partially responsible for making me feel tired . i so hope it helps. I want to be alive again! Blessings to all of you out there bravely living with these challenges. Its not easy. Thanks for insiring me with your kindness and generosity in sharing your stories.

So sorry your feeling like this. All i know is everything does pass so i pray this is the gateway to a breakthrough for you. Blessings 🙏

Hello midodrine people, I have just been prescribed midodrine... I have chronic fatigue as well as POTS so i spend a lot of time lying down. The cardiologist said the midodrine may help my fatigue but its likely i will still have some fatigue. I have not taken a dose yet, the info said not to take it before lying down.. I rarely go 2hours without having to lie down (not sleeping, just laying down and doing relaxation /meditations/ zoning out). So i dont know how it will go. I dont usually go for drug taking so i am a bit nervous... I can't see my doc for a few weeks and i think y'all are probably more knowledgeable about this anyway ☺ Any advice or warnings about taking it? What is your experience with taking it and lying down? Does it solve fatigue enough to remove the need for rests? Also i am curious what to do if i decide to stop taking it? Do you need to taper off , does it cause withdrawal? Thanks everyone 💗 Blessings, Mikayla

Thanks Pistol... Just as i suspected, there is likely more layers. Though i have realised i will have to treat the metals too as undoubtedly they ain't helping the situation.

Yes I can understand you wanting some guidance. They do sound experienced. I hope they can help you. 🌻

Hello, So i just went to my doc who is studying heavy metal toxicity and i got back some Basic hair tissue tests. It showed NO heavy metals which is apparently not normal. She said this indicates that i am a "non excreter"...That i just take heavy metals (such as from Tuna that i used to eat regularly) and hold onto them instead of excreting through sweat and hair etc.. . She believes this could be the root cause of POTS as well as my adrenal fatigue... And she is hopeful that the chelated supplement treatment could clear up POTS issue too... So.. I am sharing this in case other people might find it a helpful avenue to go down and also to see if anyone has found a link between heavy metals and their POTS ? The testing is rather expensive and so i have only done initial test so far... Still trying to figure out if i dedicate some of my POTs Specialist funds to the $600 metals test... 😵 So many facets and opinions in this puzzle!! 🌻

Hey Bomb, yes i am hoping they will be helpful. They do Skype consultations if that is feasible for you. In case it is, this is their website: https://www.activehealthclinic.com.au/ Also I found this site interesting and full of helpful tips and exercise suggestions although it is officially for cfs it could be relevant for POTS too. http://cfsrecoveryproject.com/how-to-benefit-from-exercise-even-if-you-have-chronic-fatigue-syndrome/ Best wishes to all ❤