Not Pots - But Nmh (Neurally Mediated Hypotension)

[targs66]

I'm posting this because it might help some of those who (like me) were told they didn't have POTS. I'm American but live in England - the original tilt table test was done in Liverpool.

I got the referral for the original TTT from a visiting GP who took note of my low BP (was 88/55 in the doc's office). The technicians had to ask a consultant whether or not to proceed with my TTT b/c when I was lying down my BP was 73/59. However, I was told that the results were "normal" because my BP and heartrate went up when I was tilted (it went as high as 110/98).

I then had various examinations at Johns Hopkins last fall, including another TTT - only this time I was fasting, and they administered some kind of adrenaline during the second part of the test. During the first part of the test, I again felt wretched, with low BP - but it didn't indicate POTS. However, after the adrenaline was introduced via IV and I was then tilted, my heart rate and BP suddenly plummeted. I don't know whether I passed out; just remember moaning while I tried to stay conscious.

Therefore, they concluded that I don't have POTS, but I do have neurally mediated hypotension. I've been prescribed midodrine and beta blockers. The midodrine was very helpful for a bit (although I've been going through a bad patch for the past few weeks). Apparently NMH is an abnormality in the regulation of BP- there's abnormal communication between the heart and brain (I think it's the same thing as neurocardiogenic syncope).

It is just so helpful to have some kind of diagnosis. It was through that diagnosis that I found this forum. If it wasn't for the repeat TTT, I'd still be in the dark (and continue seeing a GP who thinks this is all psychosomatic).

I'm sure there are many people here who know much much more about NMH or NCS; I just thought the story of my original missed diagnosis might help others who have been told they're normal.

Hope this helps.

[Will_I_am]

Hi Targs66,

Hey,how is the weather over there? My wife went to Oxford for a while and said it was misty/dreary most days but loved it. Wow, Very interesting, I am in the grey area for POTS with a diagnosis so far of what he thinks ( Dysautonomia Doctor) is Idiopathic Tachycardia. My TTT was abnormal but not enough to meet the criteria for POTS. When taking my TTT they did not administer any drugs and I was on my Beta-Blocker ( Metoprolol )100 mg that I have been taking for yrs for fast bpm and severe High bp. I am also on Metoprolol SUCC ER for high Metanephrines and or Catecholamines but not high enough for a Pheochromocytoma.....they did do all the testing and no tumor was found. At present I am waiting on lab work for results to see if I have had any changes or any underlining conditions causing my Diagnosis (?) and symptoms.

I have been having symptoms for 5 yrs or more now with the same results, the Doctors don't know what to do with me...I have high bp, highest ever was 173/135 and the lowest was 73/56. General Practitioners tell me my symptoms of Dizziness, loss of balance, Blackouts, sweating,flushing vision problems,migraines, etc etc are vague. I am now seing a Doctor who specializes in Dysautonomia but still in the dark as you were on what I have. Hope you get to feeling better.

Please tell me more about your symptoms and Prognosis with NMH and is it still in the Dysautonomia diseases/syndromes. It may have nothing to do with me but it might.....see my post Dysautonomia? POTS?, Or what? I am new to this forum and to Dysautonomia and I am not sure if I meet the criteria for Dysautonomias............Anyone else Know about NMH to share?

Billiam

[targs66]

hi Billiam -

Thanks for your reply - unfortunately, I've got so few answers! The docs that diagnosed me are at Johns Hopkins (and i can't afford any more care there), so I've got no one to ask about prognosis, tweaking meds, other relevant diagnoses, etc. The docs were excellent, but I don't have insurance in the US. I'm due to see my GP here on Monday and will post if there's any significant developments from that visit. That's one of the reasons that I've found this forum so helpful - I'm having to manage this on my own, and need to understand everything I can about it.

Sounds like you are going through it, too, although your symptoms are quite different than mine. I have perpetually low BP- with my midodrine, it's typically about 95/65. Without it, it was usually about 88/58 (or lower in the mornings). One of my biggest hurdles to living any kind of normal life is constant waves of weakness/dizziness - it's almost as if I am on the verge of a blackout. The midodrine has helped somewhat with that, but it's very unreliable.

I wonder if it would be helpful for you to bring your doctors' attention to some of these lesser-known dysautonomia conditions, especially if you don't seem to have POTS?

I'll certainly keep posting if (and when!) I find out more. Thank goodness for this site. Best of luck with finding some answers.

-targs66

p.s. England is great; the people are fantastic -- but the weather is abysmal!!!

[juliegee]

Hey Targs66-

I just wanted to chime in and say that NMH is often found with POTS and the two are treated with the same meds. My son also did his TTT at Hopkins and he passed out (immeasurable BP) at the 35 mins. point. (He was also DXed with NMH.) They inject you with meds at 45 mins. IMO, Johns Hopkins does the BEST job of DXing dysautonomia as they wait a full 45 to see if the HR will rise enough or BP fall enough to meet a DX. THEN, they start the entire 45 min test over with meds. So many here describe 10 or 15 min. TTT at other major teaching hospitals. Appalling.

So happy that you have a DX , but sorry you are sick. It's just good to have a confirmation of your illness and to have a NAME for it. With your pitiful BP, I would suspect that you would do VERY WELL with florinef, extra salt, and fluids. That really turned my son around. Florinef helps retain water and ultimately boosts blood volume. I suspect it would give you more energy and make your BP more stable. My son is lucky enough to have the greatest doc at Hopkins manage his NMH. I will include an invaluable information sheet from him that describes all possible meds, what they do, how they work & how to take them. Any caring doc, who reads the info, could help you trial a new drug- if your current ones are not working as well as you would like. Keep in mind that you need to try ONE new drug at a time in order to be able to measure it's effects, good and bad. AND, always start with a tiny baby dose & work your way up to a more therapeutic level over time.

http://www.cfsnova.com/OI_and_Treatment.pdf

Keep us posted on your progress!

Julie

[MomtoGiuliana]

So many here describe 10 or 15 min. TTT at other major teaching hospitals. Appalling.

Inmy experience, 10 minutes (maybe it was even less) was all that was needed to diagnose. My HR went from 80 to 160 in just a few minutes. There was no need to prolong the discomfort with additional time or testing. However, I realize the diagnosis is not always so straightforward!

[targs66]

Thanks for the info and encouragement, Julie, and also for posting that link! They actually gave me a copy of that paper when I was at Johns Hopkins, and I found it incredibly informative, but I only had a hard copy and couldn't pass it on.

Billiam - if you're reading this, I highly recommend taking a look at that paper (in Mack'sMom's posted link above) - it has a lot of info about the similarities and distinctions between POTS and NMH, as well as meds/treatments.

I actually was prescribed Florinef before the midodrine. I always seem to have awful reactions to anything steroid-related, and it was the same with the Florinef. I took - literally - 1/8 of a Florinef tab and within the hour had the familiar shakes, thick head and buzzy, sick feeling. I had taken it with a decent sized breakfast, b/c I know it can affect blood sugar. Later that day I took another 1/8 of the Florinef - still feeling rotten, but wanted to try to gut it out - and felt even worse. I ended up with an ocular migraine, which i haven't had in over 2 years. I have a weird hypersensitivity to drugs. I take very small amounts of the midodrine (usually less than one 5mg pill a day is enough for me, broken into little bits taken throughout the day), and while I've got some side effects (some jitteriness and spaciness), they are manageable. (Thank goodness for that - without insurance, there'd be no way I could afford the full prescription!)

I agree, Johns Hopkins was great (wish those were my regular doctors!). Hopefully I'll get some help from my GP Monday - will keep you posted.

Best wishes for your son's recovery.

[juliegee]

Dang it :-( I just KNEW florinef would help. Sorry. I've got my fingers crossed that your doc there will find something helpful.

Good to know they are passing out that info sheet now . Back when my son was DXed (5 years ago), we got nothing aside from the DX itself. Months later we were hooked up with Dr. Rowe and found decent help.

All the best-

Julie

[Detrick7]

Thank you Targs66 for starting this post and thank you Mack's Mom for posting pdf. I was diagnosed with NCS (aka NMH) over a year ago. It has gotten worse and really effecting my life at work and home. However, I was really starting to question my diagnosis since my worst episodes were at work while sitting down. I have a desk job and questioned how I could be having bad episodes sitting down. It seemed to be the worst when I was stressed. Some of the movements and jerking even made me think it maybe seizures. I tried two seizure medications and that did not go well. After reading the article Mack's Mom posted where it stated prolonging sitting especially when concentrating could trigger episodes that really made me feel more comfortable with my diagnosis and am going to take to my nuerologist about the medications suggested to treat this issue. I have done a lot of research and had never seen the prolonged sitting/concentrating as a main trigger. I am going to try some of the new meds and even if they don't work I will at the very least feel more comfortable with my diagnosis making my condition easier to accept. I think many of us can understand that is at the very least "comforting" to know exactly what is wrong, even if treating is difficult.

Thanks again,

Lance

[targs66]

I agree, Lance - a bit of knowledge is a huge comfort. Beyond the reassurance of a diagnosis, I also think it's crucial in "managing" this condition; for example, as you said, realizing that long periods of sitting still is problematic, and why that's problematic, could help you find an alternative that avoids a trigger.

Unfortunately, I feel like I am worlds away from normality these days - I am desperate to get back to work, and really afraid that might not happen (and then what????). But I take some hope from experiences of some people on this site... fingers crossed.