Hummingbird

I seem to get more symptomatic during the second half of my cycle, right before my period. My doctor just prescribed a monophasic pill called Mononessa, which is a generic for Ortho-Cyclen. I am hoping this helps and doesn't cause bigger problems, as I am so sensitive to meds. Anyways, good luck to you. Please keep us posted!

Have any of you undergone fertility treatment... And if so, how did it affect your POTS? My husband and I have been trying to conceive for over 6 years. We have decided to pursue fertility treatment again and will most likely do IVF. I am worried that the injectable medications will mess with the POTS. Any experience with this? Thanks!

Hello Everyone!

I have FINALLY (after 20+ years) found a cardiologist that seems to have a CLUE! <insert HAPPY DANCE here>

He told me that I fit into a POTS subtype which symptoms include IBS, anxiety, migraines and sensitivity to meds.

I was SO floored that he knew about POTS that I forgot to ask which type he was referring to! Would this be

hyperadrenergic POTS? It is my understanding that this type of POTS is possibly genetic and chronic. Is that correct?

I am currently taking low-dose Florinef and Zebeta. The Zebeta has really put the whammy on my tachycardia! Yay!!!

Anyways, any info/insight is GREATLY appreciated. On a side note... I ordered the CHANGES DVD on 1/6 and

can't wait to receive it!!!

I was also diagnosed as D-deficient, and take 50,000 iu/week. I take D3, NOT D2. A GREAT book on the subject is The Vitamin D Cure. He also has a website: The Vitamin D Cure website. My inital level was 19... at last check it was 42. My doctor wants it above 50.

Good luck!

I DID start Florinef 2 weeks ago, and it has been a LIFESAVER! I am on a low-dose (1/2 tab of 0.1 mg), but it has made a HUGE difference, esp. in my energy levels. Pre-Florinef my BP was 80/60 and HR 120-140... post-Florinef BP 90/60 and HR 70-90! I am able to stand for longer periods of time and no longer feel so drained. I have a long way to go, but this has been a terrific start! Thanks for posting and sharing your stories with me!!!

This is a fascinating topic! I was wondering about it myself when I saw Jenny McCarthy on the Ellen Show. She was saying she has a machine at home and lays in it with her autistic son. She also mentioned that Jim Carrey tried it a few times and liked it. She did say the machine cost about $18,000, if I remember correctly. I will have to ask my doctor about this and see what she thinks! When I worked in EMS and would get migraines, I would use oxygen via nasal cannula, and it seemed to help.

Hello Tammy,

I definitely think the symptoms of POTS and hypothyroidism can overlap and even exacerbate one another. I currently take Armour Thyroid. I took Synthroid for YEARS, but still had hypothyroid symptoms while on it. A great website for hypothyroidism is Stop the Thyroid Madness. It has LOADS of great info!

Hang in there, and good luck!

Tessa and Flop,

It is so refreshing to find others that have the same challenges! I was diagnosed with adrenal fatigue based on saliva cortisol results. My cortisol was within normal range in the AM, and very low at noon, evening and bedtime. I had ZERO energy and was barely functioning at work. My doctor prescribed Florinef for low BP/tachycardia and hydrocortisone, along with vitamin supplements and vitamin infusions. I have not taken the hydrocortisone. I wanted to try Florinef first, because some say that makes enough difference. I like to try a more natural approach if possible, but found salt/water and supplements alone weren't working. The Florinef has been a LIFESAVER for me. My BP is up to 90/60 and HR down to 80-90.

Anyways, I would be VERY interested to know what supplements you are both taking to help the adrenals. Along with Florinef, I continue the salt/water, and take vitamin C, pantethine (B-5), B-12 injections... and the list goes on and on.

What were/are your symptoms of adrenal fatigue?

Thanks for your posts!

Hi, Hummingbird

I would say that symptoms of POTS can be similar to many other diseases, including adrenal fatigue and/or adrenal insufficiency. The thing is that POTS can be caused by an adrenal disease, and when this is confirmed, than you have the clue to start looking for a treatment.

My story is a very long story... (as many of us)...

Then I was told I had POTS.

After this, it was confirmed that I have Adrenal Insufficiency (Hypoaldosteronism, possible Hypopit).

Furthermore, I have a Casein & gluten insensitivity, Anaphylactic reaction to local aenesthetic and nitroglicerine, melon & pineapple allergy...

Now I am on HC, Florinef and supplements: Potassium, Calcium, vitamin complex + extra salt

My general health is better than before, though not perfect.

What I recommend is BEFORE starting on a replacement therapy, to carry out all the tests in order to determine the kind of adrenal insuffuciency that you have.

Please, take a look to the following pages (worth reading):

Adrenal FAQ

Interprete Labs

Aldosterone, Florinef and salt

Adrenals: testing and treatment

And if you have been confirmed to have an adrenal insufficiency or fatigue, I would like to recommend you the following forum, too:

Hormone Support Group

Hope this helps.

Love,

Tessa

Tessa,

THANK YOU for the links! (GREAT info!) I do have confirmed adrenal fatigue. I recently started Florinef and Cortef, along with a handful of supplements. Thus far, the Florinef has been a WONDER DRUG for me. I also have gluten sensitivity. Did you have ALCAT bloodwork done? (ALCAT tests for food/chemical sensitivities)

Thanks again for taking the time to reply. It is much appreciated!

My endocrinologist will not go as far as your doctor in saying that the adrenal insufficiency is contributory to POTS. He says there are no studies and cannot say which came first, adrenal insufficiency or the POTS causing it?

In any event, via an insulin tolerance test, he could see my adrenals did not respond as vigorously as normal, and I am taking a low dose of Cortef daily, specifically, 5 mg with breakfast, 1.25mg (1/4 pill) with lunch and 1/4 pill at 4 PM.

I will be consulting with him again as I think I need more.

Your doctor may be right, but my doctor said they do not know for sure which came first, the adrenal insufficiency or the POTS. To tell you the truth, I'm suspicious of your doctor claiming she knows. Can she point to a study and teach other doctors about this? Is she a holistic, or alternative doctor, by any chance?

I do not believe we all fit in the same box, nor have the same causative factors contributing to our problem. Has she tested you for anything she is saying? Be wary of doctors or anyone claiming that they "know" what the cause of everyones' POTS is. That's my opinion.

Futurehope,

Sorry, I should have been more specific. She thinks MY symptoms of POTS are actually adrenal insufficiency. However, she is not a specialist. She is my primary care doctor who was also an ER physician for 12 years. And, yes, she is now an alternative MD.

How are you feeling on the Cortef? How long have you been taking it? I was prescribed Cortef 5mg/day to start. I also take Florinef which has been a WONDER DRUG for me. My heart rate was 120-140 with a BP of 80/50. On just half a tab of Florinef, my heart rate is down to 80-90 and BP is 90/60 most days. I feel like I have more stamina and energy. (Amazing what blood pressure does for ya!)

I agree. We certainly don't all fit in the same box. I find this syndrome as frustrating as I do fascinating!

Anyways, thanks for your reply!

One of my doctors says that my symptoms of POTS are actually adrenal fatigue/insufficiency. My symptoms are VERY similiar (low blood pressure, tachycardia, fatigue, stress intolerance, hypoglycemia, etc). Has anyone been told this? She has prescribed VERY LOW dose hydrocortisone to help with my low cortisol levels. She has also prescribed Florinef, which I haven't started yet. Just wanted to hear some feedback/opinions.

Thanks for the info, mkoven! Glad to hear that it is helping you so much. Do you have tachycardia? If so, does the Florinef help resolve it by increasing the BP? Will you have to take Florinef long-term? Again, thanks for the response!

Hello All,

Please share your experiences with Florinef with me... the good, bad and the ugly. My doctor wants me to start taking it for my low blood pressure. The additional salt I am adding to my food is not helping and my symptoms are getting worse (fatigue, low BP, fast heart rate, etc.) Someone told me that I needed labwork (aldosterone, renin, potassium and sodium) done before starting this medication, but my doctor didn't order labs. Is it standard to have blood work first? Any opinions/advice appreciated! Thanks!!!

-Lauren

My cardiologist has mentioned prescribing Florinef for me. I have also seen a lot of discussion on Midodrine. Can someone please help explain the difference and the possible benefits vs side effects of the medications, besides the obvious hypertension. I am concerned about the long-term effects of medications, but more concerned about having to live with my POTS symptoms! Thanks in advance!

Midodrine is a vasopressor, meaning it acts on the blood vessels to constrict them, squeeze them so that blood does not leak out abnormally and pool in the lower legs the way it does for many POTS patients. Laxity or looseness in the blood vessels is a problem with some POTSers. So vasopressors work to keep the blood flowing to the brain by restricting the leakage into the legs. Midodrine was developed for Parkinson's patients because they experience the same laxity. Florinef, on the other hand, was developed for Addison's patients, who suffer from endocrine disorder that results in salt wasting (meaning, their bodies flush salt out with urine, leaving the person's blood volume low because H2O goes with the salt). Florinef is often used in conjunction with salt increase recommendations for POTSers with low blood pressure, low blood volume, who complain of urinating frequently (all signs that salt wasting is causing dehydration and low blood pressure). However, Florinef is a steroid, so it has a lot of potential side effects including psychosis. Some people tolerate Midodrine, others do not. Some tolerate Florinef, others do not. Usually, Midodrine is the first line of defense for POTS, and if it is not enough the specialist with move to add Florinef.

THANK YOU so much for your response! That does help to clear it up a bit! Are you taking either medication?

My cardiologist has mentioned prescribing Florinef for me. I have also seen a lot of discussion on Midodrine. Can someone please help explain the difference and the possible benefits vs side effects of the medications, besides the obvious hypertension. I am concerned about the long-term effects of medications, but more concerned about having to live with my POTS symptoms! Thanks in advance!

Hello!

I also take Ritalin, but not for POTS. I take it for ADHD. I think it helps with some of my POTS symptoms though! I take 10mg up to 3 times a day. I don't take it everyday though... just when I really need it. What dose do you take? Has it helped you?

Take care,

Lauren

Thank you guys SO much for this GREAT info! I will ask my doctor about it as I CONSTANTLY feel that my nervous system is in OVERDRIVE! Not to mention my worrying and bouts of anxiety. It has been a nightmare. Do most people with POTS have this problem? Do they go hand-in-hand?

Thanks again,

Lauren

Interesting that you posted this! I was just diagnosed with Vit D deficiency about 2 weeks ago. I have been taking Vit D 5,000iu a day. How much Vit D did you initially have to take? I haven't noticed any benefits yet.

Lauren

Hello Everyone!

My husband and I moved to North Carolina at the end of January. Now that I have health insurance again, I am looking for a physician that is knowledgeable about POTS/dysautonomia. Any help is appreciated!!!

Thanks,

Lauren

Hello Linda!

I'm nearly at the EXACT same place you are now. My cardiologist has recommended an EP study with possible cryoablation, and I am undecided about it. I have inappropriate sinus tachycardia (which I suffer from daily) and also occasionally suffer from PSVT (where my heart goes off wildly, then slows back down and goes back into a regular rhythm). I have the PSVT about once a month. My cardiologist has assured me that he will ONLY ablate if he finds a re-entry pathway that shouldn't be there. He promised me that he would not touch my SA node. I have gone back and forth in my decision to go ahead with the procedure. Anyways, just know that YOU ARE NOT ALONE. Keep us posted on what you decide to do!

Take care,

Lauren

Angela: Thank you!

Carmen: My cardiologist has never mentioned dysautonomia. The only reason I found out about it is because I was looking for answers to my crazy symptoms and found this website. I'm not FOR SURE that I have POTS, but I know that I have ALOT of the symptoms. In "real life" I have never met anyone with these symptoms... thank goodness for the web! I am currently undecided about the ablation and have put "trying to conceive" on hold. Due to my age, I can't put it on hold for much longer though. Anyways, thanks for your help. I will do a search for "ablation"

Lauren: Nice name! Thanks for the welcome and for the link! I am not able to look at the link for some reason. I will definitely try again later.

Amy: What do you wish you would have known before your ablation? Which part of your heart was ablated? Thank you for your post!

-Lauren

THANK YOU so much for the responses! It is so nice not to feel like I am the ONLY one with these symptoms. This website has been a TREMENDOUS help. I am so glad I stumbled upon it.

Carmen: My doctor did not get very specific. He just stated that I have the option to do an electrophysiology study and possible cryoablation if any re-entry pathways are found. He would not touch the SA node, just ablate any irregularities. I kind-of want to have it done before I try and get pregnant just incase there is something he can fix. At the same time, I am not wanting to go through such an extensive procedure if it is not neccessary. I'm stuck in limbo trying to decide what to do. I noticed that you take Zebeta. I also take it. It has done wonders for me, but does tend to make me tired at times. Anyways, which procedures have you had, if you don't mind sharing!? Thanks in advance!!!

Jennifer: How did you deal with your symptoms during pregnancy? Were they serious? Thanks for your response!

April: Glad to hear that your pregnancies were uneventful as far as cardiac symptoms. What tests did you have to determine POTS?

Take care,

Lauren

Hello Ling!

I am new to the board but wanted to CONGRATULATE you! Wishing you a very happy and healthy 9 months!

Take care,

Lauren

Hello Everyone!

My name is Lauren. I am a 34-year-old female, diagnosed with Inappropriate Sinus Tachycardia (IST) and occasional episodes of PSVT. My IST occurs daily after getting out of bed and usually subsides within the first couple hours of rising. Along with IST, I have been experiencing episodes of PSVT which occur about once a month and only last about 5 minutes. I had a cardiologist follow-up appt a few days ago and told him that I want to try to get pregnant soon, but am concerned about the tachycardia being a problem. He stated that we can do an EPS study to rule out a re-entry pathway causing the PSVT. He thinks the IST is caused by my SA node being naturally set higher and I will probably have that all of my life. He states that naturally as a person ages the heart rate slows down. But, as far as the PSVT, he says this normally worsens during pregnancy and as one gets older. I want to rule out a re-entry pathway problem, but am VERY scared of having this procedure. Can someone please offer me some information and/or advice? Would it be a good idea to go ahead with the study before I try to get pregnant? Any info is VERY appreciated!!!