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Mikayla

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Posts posted by Mikayla

  1. 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. 

  2. 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

  3. 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!! 

    🌻

  4. 19 hours ago, bombsh3ll said:

    It is great that you have access to an exercise physiologist familiar with POTS - there is nothing like that in the UK, y

    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 ❤

  5. 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 🌻

  6. 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 🌻

  7.  

    19 hours ago, WinterSown said:
    19 hours ago, WinterSown said:

    Yes. Brain fog and bad decisions go hand in hand. Drinking more water, eating a healthy diet, getting exercise, and taking your BP meds will improve your condition

     

     

    8 hours ago, bombsh3ll said:

    I feel that in my case not having any effective treatment has made things worse over the 4 years I have been unwell due to deconditioning. If you are able to get treatment that lets you be on your feet and active, that in turn helps lessen symptoms in the long run. 

     

    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 🌻

  8. 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. 

  9. 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 🌻

  10. 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

  11. Hello,

    I have been waiting a few months to see a specialist about my frustrating symptoms. It seems my symptoms are not as extreme as many of you so i am wondering whether it is worth the travel, energy and mOney to see a specialist anyway. I have been confused by my symptoms for so many years when my doc said it was POTS i was so happy just to have a diagnosis. However, my doc is not a pots expert and she thinks pots is indicated by a jump of 20bpm upon standing. Mine jumps between 20 amd 40bpm usually from approx 55bpm to 83bpm (but always different).. Today was 60 resting to 88 standing 3mins. Most common is a jump of approx 25bpm.

    From what i read here it has to jump 30bpm to be pots? Mine does jump 30bpm and sometimes 50bpm but not very often.

    I do appreciate my doctor but it does seem hard to find any who have the time and knowledge to understand what may be causing my symptoms. Over the years doctors just have said its just depression, whereas i feel that i get depressed because i cant trust my energy levels or other symptoms so it becomes hard to engage or commit to life.

    I do feel dizzy, lightheaded but i have not fainted. My major issues are fatigue, foggy mind, memory problems, anxiety and depression. I have a history of eating disorderz and my diet is still a bit erratic/yoyo. But it is pretty healthy overall.

    I really cant afford to see a $300 specialist who just tells me i dont have pots afterall... But i am willing to pay if it will give me some clarity and avenues to treatment. So i am hoping someone here might tell me if my symptoms still fit a diagnosis.

    Sorry if this is a bit scattered. I am feeling foggy today but really need to feel like i am on the road to understanding what might be a cause and treatment for me.

    Do you think its worth continuing to wait and pay $300 to see a cardiologist who apparently specialises in Pots? Or does it sound like my symptoms are not severe enough for PoTs to be the underlying cause?

    Is it possible its still dysautonomia but not POTS? If its not obvious... I feel rather confused 😅

    Thanks for reading ☺

    Blessings 🌷

  12. Thanks Pistol,

    I have tried SSRI a few years ago for depression but did not like the zombie effect i experienced. Interesting you mention Ritalin as i have just questioned my doc whether ADHD may be underlying cause for my adrenal fatigue... Coz of my previous generally anxiously driven state. So i will continue that investigation. I used to veer away from medication but i am at a point now that i am willing to try anything. I am currently taking a lot of supplements inc withania, astragalus, zinc, magnesium, actvated B's, msm, omegas, evening primrose, vit e... And some chinese sleep herbs and valerian... And tamazapam when insomnia is really bad. 

    I will look into midodrine... Sorry if it was not clear in my post ~i dont faint, i just get dizzy and lightheaded when initially standing. Sometimes i feel lightheaded even when sitting... And get so tired i cant open my eyes but also cant sleep. Though i dont really know why sometimes its worse than others.

    Thanks for your suggestions i will check them out.

  13. Hello folks... Hope your all having an up day!

    I have recently been diagnosed by my doctor with POTS. Though reading here it looks like my heart rate may be unusual for the condition, as it is low. I am trying to find some understanding, firstly if this is the reason i am so so tired, and also what i can do about it. After giving me the diagnosis my doc reffered me to a cardiologist who only sees privare patients and doc now has no other recommendations for anyone who might be able to advise/treat me for the condition.

    I am desperate to find some hope as i am bedridden at least half of the time. My depression is getting worse as i cant follow my exercise program which i used to boost my brain. I also have adrenal fatigue (for those that believe in it). My energy levels and brainfog are so unpredictable i am becoming increasingly isolated, anxious and extremely depressed. No one around me has ever heard of POTS so it just seems to increase the appearance of me being a hypochondriac. 

    I am hoping someone here might have a suggestion for specialist or doctor anywhere between noosa , brisbane, gold coast or byron bay. Or maybe you just have some advice because i feel like i am stumbling in the dark.... I am not sure if POTs can be blamed because my HR s my heart rate jumps between 22~30 bpm upon standing for 3 mins... Usually it is around a jump of 25, which i know is under the POTS definition. I wonder if the Pots could be responsible for my fatigue symptoms. It has been so great to find a name and reason for my fatigue symptoms, but now I am wondering if i do actually fit the diagnosis.

    For all of you who have such extreme versions of this i send you blessings, it must be so challenging to not even be able to stand up without fainting ! Best wishes to all of you.

    My resting heart rate is between 47~60 and usually jumps to 75~100 upon standing. Most common is low 50 jump to 80 I usually have low bp as well. My bp is pretty stable on standing. I dont faint but i do get dizzy and my vision goes funny.

    Biggest problem is heavy fatigue, tired eyes, brain fog, insomnia, depression.

    I feel like i have rambled but just gotta express the frustration and hope for help. 

    Thanks in advance ❤

    Mikayla

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