Jump to content

Tilt Test This Morning, Diagnosis Is In!


Recommended Posts

I am glad I did it but it was horrible in my case, I have IST and NCS, with convulsions he said my bp was unreadable on the auto cuff but when he took it manually it was 60/30 he said it was all over the place along with my heartrate. He said my autonomic system is very out of whack, he moved me up to 0.4 mg a day of florinef.

And plans for other meds if this doesn't work. He also said after I get insurance I have to get treatment for my digestion issues, and neuropathy. I don't want to go into it but that was the worst thing ever, the EP was shocked at how my hr and bp did. He was so interested in all that happened, I had horrible convulsions right before passing out. I pray I never have to do that again but am glad I went through with it.

And I asked him why its not pots since it spiked above 30bpm, he said that they overlap but I have primary ist with pots, he said it wasn't the high rate but the dramatic fluctuations in all positions, that is worst in my case. It went up to 180, and fluxed between brady and tachy in all positions, no wonder I feel like crap at all times.

I am so glad I finally know, he said that this isn't causing my neuropathy though, he thinks I need to go to vandy. He says it needs more testing but that this with my history is not a mild case of dysautonomia like the doc first thought. So definitely have support now, this is so encouraging.

Link to comment
Share on other sites

That is so great- well not that you felt terrible, but you know what I mean. ;) It's such a relief to finally get a diagnosis.

Link to comment
Share on other sites

Well, that's just what we expected, right? It's great to have some answers. I don't think you need to worry about the IST vs. POTS.- may just be semantics or a doc that isn't well-versed in dysautonomia. IST is a high HR all of the time, in POTS it is high with postural changes, i.e. standing.

Honey, 0.4 florinef is pretty high. What dose are you on now? How are you tolerating it? I think you might need to drink oodles of water & take salt tablets. If you do end up on that high of a dose, you might need to take a prescription potassium called slow-K-8. You could ask your doc about that. A bad headache could be a sign that your BP is too high. You could take your BP several times a day to monitor how it is responding to the florinef.

I think that your neuropathy & GI issues might be related to your dysautonomia. They can all overlap. I hope you get to Vandy or find the help you need soon. Congrats on the confirmation of all you already knew!!!



Edited by corina
medical advice
Link to comment
Share on other sites

Here's a GREAT comprehensive article from Dr. Peter Rowe, an ANS specialist at Johns Hopkins- all about NCS (same as NMH) and more:



Brand name: Florinef

Type of drug: a mineralocorticoid steroid

Indication: NMH or POTS

Action: Florinef acts in the kidney to help the kidney retain sodium that would otherwise be lost

in the urine, and it may also help blood vessels constrict more readily in response to epinephrine

and norepinephrine. It helps the body avidly retain the salt you eat. It does so at the expense of

losing potassium into the urine, so it is important to take in adequate amounts of potassium each

day. We recommend potassium supplements when people start on Florinef, regardless of the

serum potassium level, and especially if individuals remain on the drug for several months. A

sustained release potassium preparation (containing 8-20 mEq) given once daily has been well

tolerated by our patients.

In our clinical trial of Florinef in adult chronic fatigue syndrome patients with NMH, the drug

was not effective when given by itself. Several studies suggest the drug is helpful in treating

NMH and POTS when given in combination with an increased intake of salt and other

medications (for example, with a low dose of a beta blocker), but no rigorous studies of

combination therapy have been conducted, and no studies in adolescents have been performed.

Common confusions: Cortisone and fludrocortisone differ. At the doses used in clinical

practice, Florinef has minimal anti-inflammatory properties, in contrast to cortisone or

prednisone, and it has no effect on blood sugar as cortisone does. Florinef is not a muscle

building (anabolic) steroid. NMH or POTS patients taking Florinef should be on a high salt diet.

Common side effects: To reduce the chance of Florinef causing an elevated blood sodium level,

make sure to drink lots of fluids while taking Florinef. Some individuals complain of headache

after Florinef and some develop worse CFS symptoms (more lightheadedness or fatigue),

abdominal discomfort of a new type or severity, new chest discomfort, or tearfulness and

depression. Depression occurs in fewer than 1 in 20 patients, but patients need to be aware of

this when they start on the drug, and to know to stop Florinef if such depressed mood occurs.

Some have found that minor side effects will disappear after a couple of weeks, and it is

worth persevering with the medication provided that the side effects are minor. Some develop

worse acne on Florinef. The tablet has a tiny amount of lactose in it, and may cause discomfort

to those who are extremely allergic to milk protein. Special pharmacies can compound the drug

without lactose or milk protein (e.g, Abrams Royal Pharmacy, 8220 Abrams Rd., Dallas, TX

75231; Tel: 214-349-8000; Fax: 214-341-7966).

With high doses, or even low doses over a long period of time, Florinef can lead to an

elevation of blood pressure (BP), especially when other medications like oral contraceptives are

added to the regimen. For this reason, we recommend that BP be monitored carefully, especially

in the weeks after starting on the drug, and monthly once a stable dose is achieved.

Suggested doses for patients with NMH or POTS: Because the optimal dose can vary

considerably, we suggest that those who use Florinef begin with a low dose and increase it

gradually. We recommend beginning with a week of increasing salt and fluid before starting on

Florinef to ensure better tolerance of the drug. Once you are ready to start, begin with ½ tablet

per day for a week, then increase to a full 0.1 mg tablet daily. A slower dosage advance ment is

to start with 1/4 tablet per day (0.025 mg). If the 1/4 tablet dose is tolerated for 4-7 days, increase

to ½ tablet for 4-7 days, then to 3/4 tablet or a full 0.1 mg tablet. By stepping up the dose

gradually, you can better determine the right dose (some patients may only need ½ tablet or ¾

tablet). Some patients report that splitting the dose (half in the morning and half with the evening

meal) provides a more even effect, but occasionally people have to return to a once a day

morning dose because the Florinef taken later in the day causes them to develop insomnia.

Each patient’s tolerance of the drug and response to it is somewhat different, so we

recommend regular visits while the doses are being adjusted. If there is no improvement, or more

bothersome side effects appear (worse headaches, substantial weight gain, and certainly

depressed mood) we recommend stopping the medication. If people continue to experience some

benefit from week to week at a particular dose, it makes sense to continue on that dose. If there

are no adverse effects on a dose of 0.1 mg per day, but no impressive therapeutic benefits have

occurred after about a month, we will try increases to a maximum of 0.15 or 0.2 mg (1 ½ - 2

tablets) per day. Whether further increases would be beneficial is unclear. If unsure about

whether the drug is having a beneficial effect, it can be stopped for a few days to see if

symptoms worsen. When Florinef is helping, but only incompletely, we usually continue this

medication and then add other classes of medication to it.

Comments: It is important to be sure that you are taking an adequate amount of fluid. We

recommend checking the serum electrolytes periodically, but the optimal frequency for doing so

is not established. Because licorice root can have the same effect on blood pressure as Florinef,

combining these two medications should be avoided. If BP increases over time, a reduction in

the Florinef dose may be indicated.

Use in pregnancy: consult with your health care provider.

Link to comment
Share on other sites

thanks ladies, ya'll are always so encouraging and helpful...

Mrs Julie I was on 0.2 mg a day. and thank you this is very insightful and will be sure to take in alot of potassium. They said yesterday that my potassium was a little low and my magnesium was a little low. i am going to get back on my OTC potassium to start with it is only 99mg but its what used to help me. and from what i understood from the EP he said that my slow heart rate is also part of NCS but my high heart rate is IST, I have been having alot of tachycardia just laying or sitting as well. he said it was everywhere from 40-80 fluctuating back and forth along with my bp going up and down the same, it would be high one minute then low the next. same with standing only mostly tachy but within seconds it would plummett and then go back up just as high which now i understand my symptoms because as it was doing it i started having shortness of breath and he would tell me exactly what was going on with my hr and bp then it would stabilize then plummett again.

he said that is very common with IST combined with NCS either way he said my ANS is completely messed up and said from my history i need to see neurology and the other doctors asap. this was actually my second opinion. my cardiologist mentioned this last week and then the EP which has no connections said the same and after the test he looked through my records and said that i was diagnosed with NCS and IST years ago but don't know why the docs i had and have didnt tell me.. now lol isn't that nice. they could have treated me back then. anyways im still going to be very careful and have an open mind but i am just glad they are helping me now and the EP wants me to go to Vandy when i can so at least i have support now.

and whats awesome is that when i came to after the test a nurse who i go to church with, the one who helped me the night i collapsed at church she was right beside me talking to the EP about what happened that night and that i was sitting when i collapsed, thats what made him a little more serious about everything so I had a witness!!! he was so helpful and told me now that they know what it is he said they havent studied it much but will give me all the help they can.

Thank God for witnesses, of my fainting and hr and bp that night. he was very interested in my case, he said he has treated dysautonomics before but nothing like this, he has only done mild cases, he said what he saw was unbelievable and wouldn't believe it unless he saw it himself. but he also had never had someone display a seizure like symptom with fainting either but he researched it right afterwards and consulted with others and realized it was just from the bp dropping, so at least he was honest and is trying he wants me to go to vandy but without insurance he cant send me yet. i am feeling ok today, i have already started taking the 0.2 mg twice a day, how much fluids and salt tabs do you think my help? i forgot to ask them that. Thank you for your help mrs Julie....

Kala- it is inappropriate sinus tachycardia and neurocardiogenic syncope. :) and don't feel stupid...

Naomi- I thought the same he said that the heart rate and bp issues weren't causing the neuropathy but that another part of my dysautonomia is.. I am awaiting to get tested when i get insurance but the more i read on small fiber i really think thats it, well except the temporary paralysis... that just scares me... I think your right though, now just to wait for the insurance. i will know soon enough i guess, i just feel so vindicated since they are taking me seriously now.

Link to comment
Share on other sites

It is always good to get validation and treatment, for the doctor's to listen to you, do the right testing, and for you to have a witness...God made sure of that :) Vandy has a good reputation...any Medical Center or teaching facility for physicians will have the latest of treatments. Glad you were able to get some answers!!

Link to comment
Share on other sites

kalamazoo - in case you want more info:

IST - Inappropriate Sinus Tachycardia. Either part of dysautonomia (likely in heissovereign's case, I'm guessing) or due to the sinus node (one of the biological pacemakers in the heart) behaving abnormally. Basically, your heart beats too fast and you get many dysautonomia-type symptoms (including fatigue, shortness of breath, dizziness, etc).

NCS - NeuroCardiogenic Syncope. Also called a vasovagal attack or vasovagal syncope. Basically your vagus nerve (which comes off of your brainstem and innervates your heart, etc) causes your parasympathetic nervous system to increase and your sympathetic nervous system to lose function and you pass out. A lot of people (myself included) do this with things like needles, seeing blood, etc, but POTSies often do it with no apparent trigger. My ANS doctor says that it's common for folks with dysautonomia to have already had a vasovagal syncope response to unpleasant stimuli before the main dysautonomia shows up (like me).

Link to comment
Share on other sites

That is truly a MIRACLE- NO COINCIDENCE; having a nurse, who had already seen you faint from a seated position, actually present at your TTT!!! There was NO WAY that EP was going to dismiss you :D Many here, myself included, have fainted from a seated position. I think it has to do with being in one position for too long. So sorry that you had to endure another faint on the TTT (not fun :blink: ); but you had great documentation of all you endure on a daily basis. And to find out that you had already been DXed, but they forget to tell you OR treat you :angry: Grrrrrrrrr.

I also wanted to mention that many have seizure-like activity before they faint. That's happened to me before. I recently got to witness my husband have what appeared to be a seizure right before he fainted this past sunner. It was very frightening to see. (He also has NCS/NMH- but is perfectly healthy between faints.) I'm surprised that your EP hasn't sen that before. It occurs when your brain is totally deprived of blood/oxygen & stops as soon as the patient is supine and blood supply is returned.

OTC potassium is a great idea. Dr. Rowe contends that there is great benefit in the Slow k-8 (prescription)- in that IT also treats the NCS, as well as supplying the potassium that is lost from high doses of florinef. Many here, myself included, have gotten great relief from our tachy by supplementing with magnesium. If yours is low, that might be very helpful too. Magnesium is best taken at night as it will make you VERY sleepy. Messed up electrolytes (low potassium & magnesium) can actually worsen your HR/BP issues- so be sure to stay on top of that. Ask your doc about regular testing to be safe UNTIL you get to a stable florinef regimen.

I know your symptoms are very severe, Since your florinef dose is higher than most, it may be a good idea to regularly monitor your BP. It can sneak up on you. An awful headache is a clue that your dose may be too much. Dr. Rowe recommends taking florinef in the AM as it can cause insomnia if taken later in the day. I see your doc has recommended differently. If your sleep is affected, maybe talk to your doctor about moving your second dose up to earlier in the day. I think my son was taking 0.3mg florinef at his worst & he took 2 Thermotabs (salt tablets) with each meal at that point and drank water/Gatorade non-stop. THAT helps the florinef work. I pray that it will be helpful for you. It was for my son and I.

So happy you are finally getting the help you need after suffering for so long

Healing Hugs-


Edited by MomtoGiuliana
Link to comment
Share on other sites

Glad you're making some headway. He told you this wouldn't cause neuropathy, but is it possible (autonomic) neuropathy is causing this.

Great point Naomi or even vice-versa. We were told that my son's GI neuropathy was secondary to his autonomic dysfunction. The two commonly occur together. I also find it hard to believe that they aren't related B)

Link to comment
Share on other sites

Thank you and i just got awesome news, i called the insurance and i get my letter in the mail this next week and preexisting condition coverage starts march 1st!!!!!!!!!!!! i havent had insurance in 5 years, finally get some help and save alot more money!!!

peregrine- thanks for expounding for Kala, lol it helped me understand more too... its so strange though i have never had a reaction from blood or needles.. mine is more like potsies, there is no apparent trigger. but one thing i cant stand is when i'm having fun or happy i get a migraine... lol and ppl wonder why i get down so easily, it hurts to be happy... does that even make sense.

Mrs Julie- I know, my church family had been praying that i had the worst time ever yesterday so they could find it, and that was a miracle that she was in there because she is a anesthesia nurse, she wasn't even supposed to be in there but saw my name on the chart so checked in on me and was just chatting with the EP about how she had seen me last month at church, that was an answered prayer because this was someone he knew from working with her and respected her so he trusted her. I have put a call into my nurse to see about the potassium, and they have my doses at 8am and 2pm. I will watch out for insomnia, and will watch my BP. Thank you so much you have been so helpful!!!

Link to comment
Share on other sites

I think your church family did GOOD work- you fainted, had a credible witness (from a prior faint) at your TTT, and your insurance was restored. Can they pray for me??? :D I laughed at your post when you said that your church family prayed "you'd have the WORST time ever." Even God had to raise his eyebrow at that one. Whenever friends or family are having tests, I pray that the truth comes to light. You hate for a loved one to suffer, BUT our physicians NEED to know what they are dealing with.

Yay- insurance!!!

Your florinef schedule sounds reasonable with the last dose at 2PM. Hopefully, you will still be able to sleep.

I will keep you in my thoughts and prayers and you see more docs to tweak your DX and treatment plan.



Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...