Just because I tried something does not mean it is safe, a good idea or something you should do.
I am NOT a doctor. This list of medications and supplements is not meant to be used to change any portion of your medicinal or dietary plans without first consulting your doctor. Something that is helpful to one person could be dangerous to another. Do your own research and always consult with your doctor about everything.
Medications/Supplements/Other
What I'm currently taking or working on:
Hydrocortisone (12.5-25mg daily split throughout the day):
This is prescribed for adrenal insufficiency or Addison's Disease. It has helped me with a TON of symptoms (fatigue, nausea, night sweats, salt cravings and a whole slew of weird random things). I've been trying to ween off of it to see how I do without it though since I question my original diagnosis. This is the first time I've gotten on this low of a dose (12.5mg) without unrelenting severe nausea, stomach and back pain (low cortisol symptoms). We'll see how this goes but honestly I'm not that hopeful!
Florinef (0.025-0.1mg daily):
This was also prescribed for the adrenal insufficiency or Addison's Disease. I have been on this long before being diagnosed with POTS. I backed off of this medicine for a while because I never know if it is actually doing anything for me. It is supposed to raise BP and help your body to retain sodium. DHEA (12.5mg daily in the AM):
This was also prescribed for AI or Addison's Disease. This has been amazing for my sex drive, but if I take more than this I start to get acne and very oily. The reason for this is because DHEA converts into testosterone.MethylB12 subcutaneous injections (Daily or as needed):
I tested with low-normal Vitamin B12 levels a few years ago when my left leg was completely numb from the knee up. Injections help to keep the numbness at bay, but I need large doses for reasons unknown to me or my doctors. Sublingual tabs raised my B12 levels in serum, however did nothing for the tingling and numbness.
Chelation Therapy (DMSA on a set schedule, Will be trying DMPS soon):
I have heavy metal exposures from amalgam fillings as well as lead from my bathtub. It is my theory this is the huge underlying causes for all of my health issues. Will my theory pan out? Who knows, but I have to try something other than bandaid fixes. Diet:
Over the years I have made significant changes to my diet. I do not eat any packaged foods, no soda of any kind, no artificial sweeteners, MSG and any other preservatives . I do not eat out at any restaurants. All of the meals I eat are cooked by myself, so I know exactly what I am placing in my body. I have had various foods show up on allergy tests and eliminated the highest ones. Only recently I have been adding foods back in to see how I do.
Most notable, I am completely gluten free. I watch out for cross-contamination and do not buy products that are also processed in facilities that use wheat. When the family went gluten free, I threw out our toaster oven, cutting boards and anything else that touched wheat (and could not be cleaned out).
What I've tried over the years for my overall health (Always adding new stuff):
Metoprolol ER (25mg):
I took this beta blocker for about 3 months or so and it was great until side effects from the beta blocker outweighed the benefits of the drug itself. I developed painful chilblains on my toes and was unable to wear shoes for weeks without having to wrap my feet up. My chest and lungs began to feel wheezy and I was also becoming quite fatigued, which I do not normally suffer from.
DDAVP (1-2 sprays daily):
I have been diagnosed with partial diabetes insipidus and I took this in order to concentrate my urine. You can read more about diabetes insipidus, which has nothing do to with blood sugar at this website. I no longer take this medication and for some reason the frequent urination resolved on its own.
McComb's Diet Plan and Formula SF722:
This is a candida diet. I did a modified version of the plan without the sweating! I felt more even through out the day and lost a lot of weight. The diet is very strict and is hard to follow for long periods of time.
Parasite Cleanses:
Many of us with POTS and Dysautonomia have gastrintestinal issues. Some people find gastrointestinal symptom relief after using a cleanse. The one I used years ago helped with some random symptoms, but did nothing for POTS.
Amalgam Filling Removal:
This is self-explanatory for me, but they are full of a toxic heavy metal known as mercury. There is debate whether or not it is toxic in the fillings (or it can be leeched), but from my own research I decided to get them removed. Hormone Replacement (Thyroid and Adrenal):
Lots of people find relief after starting hormone replacement. While hydrocortisone has been good for treating Adrenal insufficiency, it did nothing for the POTS. Thyroid hormones only increased my sitting and standing HR's, which is not what I needed whatsoever. More supplements than I can even remember or count:
I've tried dozens and dozens of supplements to see if they made any improvement in my health. Most notable was my inability to take the active forms of B5 or B6. I also cannot take CoQ10, or L-Carnitine. All of these, contrary to what most other POTSies report, were terrible for me. They caused lots of heart palpitations and I cannot take them or they will come back within a day or two. Just shows you how differently our bodies react to stuff.What I refuse to try for my own personal/moral reasons:
Been there and done that from age 15-20. Completely messed up my hormones, gave me severe headaches/migraines and made my sex drive nonexistent. Getting off of all types of hormonal birth control (not just replacing it with another brand or type) was one of the best things I ever did for my health.
Any SSRI, Antidepressant and Anti-anxiety meds:
Studies show they perform not much better than placebo. I also do not like the feeling, I'm out of control, which a lot of these drugs do to you. Also they are difficult coming off of them if you decide to no longer take them. All of those reasons combined is why I refuse to take them. Some people find they are good for them though.Adderall:
This one scares the hell out of me. I don't need to take an amphetamine. Muscle Relaxers:
Same as above! I want to be able to feel what I'm doing with my life.
