Recent Nmh Diagnosis - A Few Questions.

[sophia]

Thank you so much in advance to reading this post and for whatever information you are willing to share. I feel so fortunate that I have found this community, as I'm really struggling with my health and am eager to find solutions.

I had a tilt table test that came back positive for NMH Nov.24, though I have been struggling w/ fibromyalgia + chronic fatigue symptoms for nearly 4 years. I am learning that there is a relationship between the two. I am wondering if anyone can relate to my symptoms, as they seem somewhat uncharacteristic of NMH. I typically feel well enough to do most things from about 10 am - 5pm, though I do have pain + fatigue. Predictably though every early evening I experience a crash that happens rather suddenly and leaves me bedridden with debilitating fatigue, dizziness, + flu-like symptoms. Sometime it is so severe I have to lay in darkness + silence for hours. Ironically I typically don't sleep during this time, though about the time it starts to ease up a little, it is time for me to fall asleep. Does this sound like NMH? Perhaps an accumulation of symptoms from compensating throughout the day? Can anyone relate?

My next questions have to do w/ treatment. I have been experimenting with all the conservative treatments - consuming up to 2 liters of h20/day + salt, compression garments and i just elevated my bed about 4". I have also been prescribed a low dose of hydrocortisone (5mg/day), a beta blocker (pindolol 5mg 2/day), lots of vitamins/supplements including licorice root (1 cap 2/day). Granted it has been a relatively short period of time, 3 weeks, I have noticed no impact at all on my energy crash. In your experiences, how long did it take before you noticed a difference? Based on my experience, does it sound like my fibro/fatigue symptoms are related to my NMH?

Thanks again.

sophia

[Friedbrain]

Well, I'm no expert with NMH, as I'm a newbie here and am still learning myself, and nothing I have to say may be relevant to your condition, but..... in the past, I have experienced periodic bouts of severe flu-like symptoms (no fever/flu). In hindsite, I realize the episodes spanned the time around ovulation. No doctor took me seriously (heck, I even had an obgyn pat me on the head and tell me fatigue is a common problem with women and not to worry about it), as I hadn't connected it at the time, and I could never get into a doctor *right* when I was feeling awful. It was worse in the evenings. At one point, because of autoimmune antibodies, my doc didn't want me on birth control pills so I went on the progesterone-IUD. Totally exacerbated my flu-like symptoms. I tried looking it up but found nothing. Thena new endo wanted me to taper off my cortef in order to test my baseline adrenal responsiveness...OMG, I got SO sick doing that-the absolute worst flu-like symptoms (no fever) that I've ever experienced. I remember crying at night over it. I was in tears over the phone, begging the obgyn to let me come in so she could take it out. I got it out and within a day or so was fine again. I know it's not in the textbooks......but it was my life!

After experiencing that (I never did successfully taper off the cortef-way too much distress and I was happy on it; that's what happens when you move and a new doc wants to start testing all over again!), I tried increasing my cortef (which an adrenal insufficient person is supposed to do during stress and sickness) during a flu-like episode and the pain and symptoms went away. I see that you are on hydrocortisone, so maybe something similar is going on with you? I haven't experienced that in a looonnnnggg time, now that I think of it (knock on wood! of course, I still have problems, just different ones ) . I would say that was a problem I had in my early 30s. Also, fwiw, I take 10mg cortef in the morning and 5mg in the evening. There's a circadian rhythm to cortisol such that it's supposed to be high in the morning and lower in the evening, but maybe your level is too low? Just a thought.

Oh, and sugar always made me feel more feverish during those times. (now it either makes my heart race or fall asleep, but it still causes me problems!)

Good luck!

[Friedbrain]

Sorry to add more, just re-read your post. Fwiw, my main dysautonomia symptom for the last few years would be hypotension, like you; and interestingly, I would say that fatigue and the flu-like symptoms had been a problem since about 13 ys ago, at least. So maybe there's a relationship. One thing that helped IMMENSELY was starting the low-carb pseudo-diabetes diet that I've been on for the last 10 ys ago. 11 ys ago, the fatigue was so bad that I basically lost an entire year of graduate school because I couldn't stay awake during the daytime. My eyes would just close and my brain would shut off. I was having ovarian cysts at the time, and also that on/off flu-like stuff. Awful time. Somehow I heard something that made me think of trying the diabetic diet. It wasn't hard, and I felt 1000% better not long after-it was like a magic bullet that I can't even describe. I had so much more energy and started losing weight without really even trying. I rarely even slip up these days-like 10 ys later-because I know how awful I will feel even just by thinking about eating that brownie....

Anyway, you may be right that there's a link that hasn't been found yet. I think there was/is for me.

[juliegee]

Hi Sophia (& FB)-

My son has NMH and suffers from symptoms very much like what you describe. NMH is commonly associated with Chronic Fatigue syndrome (CFS)/Chronic Fatigue & Immune Disfunction (CFIDS)/Myalgic Encephalopathy (ME), & Fibromyalgia (FM.) My son also carries the CFS DX.

Sophia, have you tried florinef yet? It's similar, yet different, from the hydrocortisone. It raises BP, helps retain salt, and boosts blood volume. I also wonder why you're taking a beta blocker as many with NMH have such a low HR & BP to begin with.

All the best-

Julie

[sophia]

Thanks FriedBrain.

Interesting. It sounds like we have some commonalities here. I too have the progesterone-IUD, and although it has been my magic bullet for endometriosis pain, having some suspicions that it was causing/exasperating my symptoms, I too had it removed. However, I didn't feel any better and 3 months later I had it replaced. That was almost 4 month ago. Now I wonder, is 4 months long enough??

About a year ago I tried the hypoglycemic diet - religiously for 1 month - but didn't really notice a difference. I felt pretty deprived and couldn't really justify continuing it. Now I wonder, is one month long enough?

I've only been taking cortef for 3 weeks (5 mg at noon). Do you recall when you started to notice its benefits? I don't know if I'm adrenal insufficient. I'm pretty sure that my cortisol tests came back normal, but that my fibro doc experiments w/ cortef regardless.

Very curious....

[songcanary]

Gosh, experimenting with Cortef? That's pretty scary because my (now former) doctor did the same thing before I was dx'd with NMH. I crashed big time with two ER visits in the same week. So she put me on it, assuming my cortisol was low. The symptoms of high and low cortisol are very similar, isn't that weird? Anyway, I just didn't feel comfortable taking cortisol without lab confirmation so I had bloodwork and saliva cortisol tests done and sure enough, it was elevated off the charts. All 24 hrs. I quit the drug and the doctor on the same day. Just want to spare you unnecessary grief. And I agree with Mack's mom that NMH and beta blockers--hmmmm just doesn't seem quite right. Just a thought.

[Noreen]

Hi-

They tried me on a beta blocker when I was first diagnosed and I could not tolerate it at all. Severe fatigue was increased.

Does it make a difference if you break up activity? I am thinking of a nap/rest period in the afternoon - this approach helps me to stay up through dinner most of the time.

I've had fibro since 1990 due to MVA and NCS/NMH was dx in 2002 after I fainted while shopping. However, I had been fluid and salt loading since my primary told me it would help since 1997. I more than likely have CFS but since I have RA since 1998 and other autoimmune issues the docs don't use it.

Weather changes bring about the severe energy depletion you mention. As I try and sort out which symtpoms are fibro related and which are dysautonomia I put severe fatigue while being beaten by crow bars in the fibro category while severe fatigue - the type where you feel incapable of getting up even if there was a fire as combined.

Just my experience but for what it is worth, I would suggest nixing the beta blocker and try energy conservation. This stuff builds up and sneaks up on us as we are pushing through and trying to live.

[sophia]

So, do you all think it's fair to say that if I haven't started feeling better after 3 weeks on the cortef + beta blocker that they are not appropriate treatment options? I have no idea how they're suppose to take to "kick in."

Thanks so much!

[Tuesday]

My doctor usually tells me to try something for a month before deciding it's not working. I couldn't tolerate a beta blocker, either.

[Friedbrain]

Did you start everything at once? Back when "my head blew up", I felt this intense need to fix myself right away so I ended up starting a bunch of meds all at once. It was hard to know what was working or what wasn't, but I'd become very tired and it ended up being a mess to figure out. Maybe that's what's happened in your case?

Fwiw, I had the ACTH stim test, and the results were abnormal, which is why I was put on cortef. The method for testing adrenal function is VERY important and, as I discovered, some testing places don't even know how to administer it. Because cortisol has that circadian rhythm, measuring it in the morning would show your "high", whereas if you measure in the afternoon, it will be lower. So time of day is important. When I had it done the right way, I had to actually go to the hospital. They had me lie down on a cot and took my baseline; then gave me the injection. I had to stay there for an hour; they came in and took blood samples at 30 and 60min post injection. Again, it only works if it's in the morning to show your peak, and then whether your adrenal is able to respond to the ACTH. Two questions being looked at. Oh oh oh! And maybe ask your doc why you're supposed to take it at noon instead of in the morning. That seems odd to me but I guess he has a reason....?

The cortef did help pretty quickly. I'd been having a lot of postural hypotension, and it helped (altho I've been on and off fluorinef as an added boost over the years, but I don't like it and go off it as soon as I'm feeling better....my bad, huh?)

As for the low carb diet.....I didn't have a hard time going on it, and really felt sooo much better on it that it wasn't hard for me. I've read that it's like withdrawal for some people, as the carbs can be addictive. But once over that withdrawal hump, it's supposed to be the same kind of feeling-more energy and just overall better sense of balance (healthwise). I am very boring in my diet because I've found what works and don't stray very often, but I'm happy with it. At first, I had snacks of cheese and pretzels (combine carbs with cheese or fats). Now, I drink slimfast lowcarb drinks (regular diet drinks give me the shakes) and the lowcarb bars (try different ones; some work for me and some don't) for snacks. I don't feel like I'm missing anything usually (except around holidays!) because I have such negative reactions to cheating. It's like electroshock therapy

[Noreen]

As for the low carb diet.....I didn't have a hard time going on it, and really felt sooo much better on it that it wasn't hard for me. I've read that it's like withdrawal for some people, as the carbs can be addictive. But once over that withdrawal hump, it's supposed to be the same kind of feeling-more energy and just overall better sense of balance (healthwise). I am very boring in my diet because I've found what works and don't stray very often, but I'm happy with it. At first, I had snacks of cheese and pretzels (combine carbs with cheese or fats). Now, I drink slimfast lowcarb drinks (regular diet drinks give me the shakes) and the lowcarb bars (try different ones; some work for me and some don't) for snacks. I don't feel like I'm missing anything usually (except around holidays!) because I have such negative reactions to cheating. It's like electroshock therapy

I really had a hard time trying to follow the low carb diet the cardiologist's office gave me - basically a one page xeroxed sheet. I had bettre luck (because it made sense to me) using the book The Spectrum diet by Dean Ornish. I still have problems preparing meals, however. What worked for you going on the low carb diet? I have spent days (my day = 4 hrs)searching on the net and it can get totally overwhelming. I have so many different things going on that I usually cannot tell that something is working well - everything is much more subtle than that.

[Friedbrain]

I really had a hard time trying to follow the low carb diet the cardiologist's office gave me - basically a one page xeroxed sheet. I had bettre luck (because it made sense to me) using the book The Spectrum diet by Dean Ornish. I still have problems preparing meals, however. What worked for you going on the low carb diet? I have spent days (my day = 4 hrs)searching on the net and it can get totally overwhelming. I have so many different things going on that I usually cannot tell that something is working well - everything is much more subtle than that.

Well, I am not a cook nor do I have any creative answer for you. I don't remember exactly what I ate when I started out other than the pretzels and cheese mini snacks that I had between meals. Nor did I/do I follow a formal "diet". I had a diabetes counselor explain the concept, which is that simple carbs result in insulin dump and high highs and low lows of blood sugar, so I needed to eat multiple smaller meals, with more complex carbs, and to ALWAYS eat either/and proteins and fats with the carbs.

My "diet" now is almost exactly the same every day, which is probably why it wouldn't work for many people, but maybe it could be a start. For breakfast, I start with the Slimfast low carb ready-to-drink drink. Around 9:30-10am, I have a Zone Perfect bar (caramel chocolate-for some reason, however they formulate it, despite the chocolate and caramel, I CANNOT get a sugar high from it. It's really amazing. In the past, I was guilty of trying to hyperfocus by using sugar with coffee in order to be super productive, but-and I've tried!-I cannot get that turboboost from these bars. Seriously amazing for maintaining even bloodsugar for me). It's the perfect non-guilty pleasure! Anyway, that keeps me until lunch. My lunch at work is a frozen Fiesta Quesadilla (sp?) box from Weight Watchers Smart Ones (I eat both quesadillas in the package). Or a giant chicken wrap from the cafe. For dinner, I make myself a wrap or two: microwave a lot of frozen vegetables (I vary the kind, but always with a lot of beans; so either I add in beans from another frozen bag, or I buy a veggie/bean mix); throw them onto the wrap and add cooked chicken (I buy it pre-cooked; did I mention I'm not a cook?) and cheese, then heat. I add on Thai peanut sauce. I usually do that every night because I like it and it's simple. But sometimes I make up a crockpot roast and then eat that for a few days with some carbs and veggies. I sometimes add popcorn at night, cooked in lots of oil. I don't know why it doesn't bother me, haven't researched it, but it doesn't and I like it I personally cannot drink fruit juices or eat much fruit-gives me the shakes. Sometimes I drink (along with protein like chicken) a little fruit smoothy that I make my kids, with yogurt, bananas and frozen fruit but that's it.

I don't eat what I do now to lose weight. I eat it because I have found things that I feel better eating. I did buy a low-carb crockpot recipe book and hope to get more creative, but have yet to try it. Maybe a New Year's resolution

[shortfloss]

Hi Sophia,

I totally relate to the crashing at like 5 everyday. Its really annoying. Before then I'm normally reasonably ok and then wham my body goes nuts. Basically I never faint before late afternoon... Oh I have NMH and POTS. So far I havent found much that helps with the nightly crashes specifically. But they are less severe when its not hot, and im getting plenty of exercise, salt and heaps of water...

[Noreen]

Well, I am not a cook nor do I have any creative answer for you. I don't remember exactly what I ate when I started out other than the pretzels and cheese mini snacks that I had between meals. Nor did I/do I follow a formal "diet". I had a diabetes counselor explain the concept, which is that simple carbs result in insulin dump and high highs and low lows of blood sugar, so I needed to eat multiple smaller meals, with more complex carbs, and to ALWAYS eat either/and proteins and fats with the carbs.

My "diet" now is almost exactly the same every day, which is probably why it wouldn't work for many people, but maybe it could be a start. For breakfast, I start with the Slimfast low carb ready-to-drink drink. Around 9:30-10am, I have a Zone Perfect bar (caramel chocolate-for some reason, however they formulate it, despite the chocolate and caramel, I CANNOT get a sugar high from it. It's really amazing. In the past, I was guilty of trying to hyperfocus by using sugar with coffee in order to be super productive, but-and I've tried!-I cannot get that turboboost from these bars. Seriously amazing for maintaining even bloodsugar for me). It's the perfect non-guilty pleasure! Anyway, that keeps me until lunch. My lunch at work is a frozen Fiesta Quesadilla (sp?) box from Weight Watchers Smart Ones (I eat both quesadillas in the package). Or a giant chicken wrap from the cafe. For dinner, I make myself a wrap or two: microwave a lot of frozen vegetables (I vary the kind, but always with a lot of beans; so either I add in beans from another frozen bag, or I buy a veggie/bean mix); throw them onto the wrap and add cooked chicken (I buy it pre-cooked; did I mention I'm not a cook?) and cheese, then heat. I add on Thai peanut sauce. I usually do that every night because I like it and it's simple. But sometimes I make up a crockpot roast and then eat that for a few days with some carbs and veggies. I sometimes add popcorn at night, cooked in lots of oil. I don't know why it doesn't bother me, haven't researched it, but it doesn't and I like it I personally cannot drink fruit juices or eat much fruit-gives me the shakes. Sometimes I drink (along with protein like chicken) a little fruit smoothy that I make my kids, with yogurt, bananas and frozen fruit but that's it.

Your experience mirrors mine. The cardiologist's 'sheet' just made no sense to me due to listing limiting high carb veggies like carrots as bad. A diet based on nutrition made so much more sense to me and the Ornish book spells out how to do things based on your risk -pretty much go all out and strict if you are a candidate for heart transplant or cut yourself some slack if you have elevated trigycerides. The recipes in the book are written for beginning cooks.

I am a popcorn junky - have been for decades. It probably was my body's desire for salt. BTW, popcorn was on that xeroxed sheet. I used to have that same energy bar for either a mid morning or afternoon snack for probably close to ten years while I was working.

I envy you that your body gives you immediate feedback on what it can or will tolerate.

[sophia]

Hi Sophia,

I totally relate to the crashing at like 5 everyday. Its really annoying. Before then I'm normally reasonably ok and then wham my body goes nuts. Basically I never faint before late afternoon... Oh I have NMH and POTS. So far I havent found much that helps with the nightly crashes specifically. But they are less severe when its not hot, and im getting plenty of exercise, salt and heaps of water...

Do you think your 5pm crash is related to POTS/NMH? Do you have pain as well? I've also been diagnosed w/ fibromyalgia/chronic fatigue. Most of my tests over the years have come back normal - save for low vit d + iron, which I've treated and seems to be under control. It's so clear to me that something is wrong and felt kinda elated that my ttt came back positive as I hoped treating my NMH would be the key that cracked this code. I think I'm now discovering that it's gonna be more complicated than I had initially thought.