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Mikayla

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About Mikayla

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  1. Thanks heaps everyone, I will let you know how it goes ... ❤
  2. 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.
  3. 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 🙏
  4. 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
  5. 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.
  6. Yes I can understand you wanting some guidance. They do sound experienced. I hope they can help you. 🌻
  7. 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!! 🌻
  8. 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 ❤
  9. Thanks everyone, I think i will explore the heart rate monitor idea and see if it helps, and also look into the levine protocol. Its interesting how different we all are. At the moment i find it hard to decipher what exacerbates my symptoms or brings them on... And then once i feel anxious and depressed about it all it seems that feeds into it too. Feels like being trapped in a maze sometimes! If anyone else finds it interesting, I just found this website , although its for cfs i think it could apply for PoTs people too. Even if all you can do is diaphragmatic breathing it will help. http://cfsrecoveryproject.com/how-to-benefit-from-exercise-even-if-you-have-chronic-fatigue-syndrome/ Best wishes everyone 🌻
  10. Hi , i have had some shaking of my hands and inability to remain standing up but nothing anywhere close to as extreme as you are experiencing. It must be scary. I hope you find some clarity and relief soon. Best of luck to you 🌸
  11. Hi, I also have adrenal fatigue and recently heard of people using heart rate monitor's to manage appropriate exercise levels. I am not sure if this applies to POTS too? I am curious what kind of exercise you or your doctors suggest. I usually can manage a 15minute walk or some gentle pilates or stretching, sometimes more or less... Some days i overdo it and then pay the bedridden price for days afterwards ... But i dont want to let that put me off. Its easy to get scared of overdoing it and then avoid exercise and contribute to deconditioning. Any advice on how to know when your doing too much? Do you use a heart rate monitor or any other method to measure your ability for that day or do you just try to 'feel' how much is enough? I didnt realise it at the time but i used to be quite fit (exercising everyday as well as being a massage therapist.) . So i really miss the endorphins from fitness and i am keen to avoid further deconditioning. I am booked into a POTS exercise physiologist but have to wait till next year so any advice to tide me over till then would be helpful. Thanks 🌻
  12. Thanks again everyone, I am curious what kind of exercise you suggest. I usually can manage a 15minute walk or some gentle pilates or stretching, sometimes more or less... Some days i overdo it and then pay the bedridden price for days afterwards ... But i dont want to let that put me off. Its easy to get scared of overdoing it and then avoid exercise and contribute to deconditioning. Any advice on how to know when your doing too much? Do you use a heart rate monitor or any other method to measure your ability for that day or do you just try to 'feel' how much is enough? I didnt realise it at the time but i used to be quite fit (exercising everyday as well as being a massage therapist.) . So i really miss the endorphins from fitness and i am keen to avoid further deconditioning. I am booked into a POTS exercise physiologist but have to wait till next year so any advice to tide me over till then would be helpful. Thanks 🌻
  13. Thanks so much to both of you . It is really comforting having people who understand and share their experiences... Makes me feel a little less alone in this challenge. Good suggestions WinterSown. Thankyou. It really is a wonderful supportive forum. Today I saw a different GP who has never heard of Pots, basically shrugged it off and said i just need to work on my mental health and it will clear up. Its really confusing with so many different opinions. But it seems the physical symptoms affect my mental health.. I have to wait for 2.5 months to see a specialist who can prescribe the meds like midodrine. My GP cant do it for some reason i cant remember. Until then i will just keep up the fluids, electrolytes, gentle exercise and hope. ❤
  14. Hello, Is POTS a permanent thing that needs to be managed for the rest of life or do some people just take some meds and moderate their lifestyle for a while and then go back to 'normal' life? Also, if it goes untreated is it likely to get worse? Does it generally get worse or does it go away by itself sometimes? It may be a silly question but i seem to learn best from questions. I keep doing research and getting major mind fog and end up more drained and confused than when i started 😅... And i still have months to wait before i can see a specialist. I would really appreciate your sharing your knowledge 🌻
  15. Thanks everyone, I really appreciate you taking the time to share your perspective. True, it will be great to talk to someone who can bring some clarity either way. I talked to my doctor today.. I am not sure this cardiologist is actually a specialist but he is apparently the only person my doctor knows of that has AnY knowledge of Pots. So i will give it a go... I certainly need to do something! I am also waiting to see a neurologist through the public system in the city. But that seems like it will be several months on waiting list. Ahhh so many good lessons in patience, acceptance and perseverance. Much admiration and compassion to all of you dealing with these symptoms. Blessings xX
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