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Mikayla

PoTs Treatment in Northern NSW /Sth East QLD

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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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@Mikayla - welcome to the forum! I am so sorry that you are dealing with all this seemingly on your own. I can tell you that the fatigue and depression are very common for dysautonomia. .I suffered badly from them. I improved when I started not only heart meds but also SSRI ( it is prescribed for POTS but helps with depression ) and Ritalin ( helps with energy and brain fog ). Wit your low BP and fainting you probably could benefit by a vaso-constricting medicine like midodrine. A beta blocker often gets prescribed for the tachycardia. Are you currently using compression stockings? They really work. Once you start an some meds and are able to be more active you will feel less depressed and less fatigued. What are you taking so far? 

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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.

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@Mikayla - have they checked your Vit D and Vit B12 levels? And your ferritin? All these are commonly depleted in POTS and also cause the symptoms you experience. I was deficient in all 3 and since supplementing them my fatigue ahs improved and I have enough energy to be more active which in return improved my sleep cycle. 

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