songcanary

I have the same issue, it is Raynaud's disease. The extremities don't get enough circulation. I have had this for decades. And can you believe it, I used to walk dogs three times a day in the cold and I'd wear two or three pairs of good gloves just to get through it! My rheumatologist said the best thing is to prevent getting cold in the first place, which is what I've always done. He even said he has patients who wear thin gloves to sleep in. On some nights, I can see doing that! I have also found that since starting Armour thyroid I am staying warmer in general. Before that, the Raynaud's was worse.

Sue, This is fascinating. I have an unbelievably long list of true food allergies and I have been wondering where in the world they came from. This could be a possible explanation. Fortunately I am able to take sublingual food drops for several of them so I can at least maintain good nutrition. But one slip up, and it's hive-city. Thanks for this interesting post.

Any chance you are sensitive to the peanuts? Could be a food reaction. I have multiple food allergies and sometimes the symptoms are not classic (like hives), but more like you describe. When I take more than 5g salt a day, I swell up, mostly in my hands. With dehydration I have blurry vision, a detached almost dreamlike feeling-it is horrible. Thank goodness that hasn't happened for months! In the beginning I went to the bathroom a lot too, but soon (within a week I think) I was retaining well because of the sodium and now I go just every several hours, pretty normal for me.

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.

I have the same problem; allergic to the high fructose corn syrup etc. So I make my own by adding 1 teaspoon sea salt to 2 L water. I have occasionally used 2 tsp salt, but it made me swell up. Sometimes I chase it with some juice for taste. I like your idea of the orange juice. My doctor at CC said it is best to get potassium from foods, so I usually eat a banana every day, I don't supplement the drink. But I am still not clear on how to get enough potassium! Apparently it's dangerous to take too much, so I don't push it.

I have been taking 5HTP since May and it has helped so much! Recently my rheumy increased my dose from 100mg to 200mg at bedtime. I have terrible insomnia and am also taking Doxepin 25mg. The 5HTP has really made a positive difference. Don't hesitate to try this. Sweet dreams

So right, Issie. When I finally got diagnosed, my rheumatologist tapped my knee with the little hammer and my leg could have kicked a field goal. He said I have 'central sensitization syndrome', common in dysautonomia. It has happened with other doctors, but he was the only one who made the connection. I have been overly sensitive my whole life (emotions, food & drug allergies, skin flushing) but now at least I know why. I agree that living a simpler life is better. The body was not made to run continuously 24/7. I am 55 and just now realizing this??? It just proves that an old dog really CAN learn new tricks

I agree with Dianne. Working in the health care field does have its advantages and because of it, I was able to narrow down my diagnosis even though my (now former) brain dead PCP couldn't do it. Three years wasted because of it, GRRRR. Anyway, I was a medical assistant first, then retired as a veterinary technician after 16 years. Currently I am a self-employed professional pet sitter but haven't worked in ten months. I am just now picking up a tiny bit of work to see how it goes. My clients are heaven-sent, they have been wonderfully understanding and I am very grateful. Another thought I had is that when I first got diagnosed, my serum and saliva cortisol levels were off the charts, especially at night. I have always worked in a field that is loaded with stress (at least for me) and I just don't handle it well at all. I think that's part of what made me crumble. Because all my life I have had low blood pressure (90/60) but it never caused symptoms like I have now. It really hit me in the face at how damaging high cortisol levels could be. So I am decompressing and working hard on regulating my response to stress. It's a tall order for someone like me but now I realize just how critically important it is. I will be interested to see what my recheck levels are; hopefully a little improved by now

Tearose, It is a brilliant fridge sign! I'm in the same boat with wanting to do more on the occasional good days. Oh how frustrating this is. I have been dying to adopt a rescue dog so our little pup would have a nice playmate. BUT do I really have the stamina to properly train and housebreak a dog right now? I spent every day for months with our dog and she is on auto pilot and now I'm spoiled. Then I'll have a relapse and think how lucky I am to not have to adhere to a schedule right now. Ugh, what a predicament.

It's a good question and I don't know the cause. But I can tell you that I've been there and done that with the dizziness, chills and tremors. They are so horrible. And they looked at me like I was nuts in the ER, twice no less! Of course by the time I got there, I was stable, duh. I just wanted to tell you that I totally know how you felt. Hopefully someone else can shed some light on the ear thing. It is sometimes tricky to identify triggers and we try so hard! Best of luck and take good care.

That was a beautiful description of fear--I felt like you were describing my day! I have missed so many activities because of this illness (and I mean routine stuff, not just fun). I definitely have been taking it easy and I guess it's a sign of improvement to WANT to do stuff. Because it wasn't that long ago when I was so sick that I didn't have the strength to consider anything. And so right about the trial and error. I'm slowly finding my limits and hopefully will get into a tolerable routine as time goes by. Naps and decent sleep are bare necessities for sure. Boy oh boy, every day is a new day with dysautonomia

I am going to check out Iyengar's book, it sounds very interesting. Thanks for all the encouragement because today is not so good LOL. But now at least I can laugh about it because I have gotten over it before and I know I will again. Wishing a good day to all! Now if I could only figure out how to use these cute little emoticons...

Thank you both for your kind replies. Going through this seems a little like repeatedly dipping your toe in to test the waters. And when I look back on last year at this time, clearly I am better, and I am so grateful. After I posted I was ashamed of myself because I realize that there are people out there who are far worse off than I. I like the reference to lyengar yoga, because I have been doing exactly that for a few months now. I thought I would do yoga as a transition back to my regular routine, but I ended up being a convert. It helps me in so many ways that I wish I had started it years ago. Many thanks for the good advice. It is so comforting to talk with people who really understand. This board is awesome!

I hate to sound like a whiny baby, but here goes. I was diagnosed in July with NMH at the Cleveland Clinic. Since forcing salt water and taking doxepin & 5HTP, I am dramatically improved. Especially regarding the lightheadedness & nausea; that was unbelievably horrible for three years. Slowly I have been working up to yoga class 3x a week and resuming some quiet activities. But in general, I still feel hesitant to do anything more than routine housework and caring for my pets. I usually feel like I might get lightheaded while I'm out, so I avoid going. But I have noticed that once I am out that I sometimes, but not always, feel better. Maybe just moving some blood around helps? On occasional days when I feel well I just long to do everything that I used to. I was very active and ran my own pet sitting business for 10 yrs, which I have given up for the time being. I WANT to work. But there is this little black cloud hanging over me that keeps me fearful that I'll collapse away from home (and it HAS happened but not since Dx) so I'm afraid. I wonder if I need more/different meds. I can't tell if this is anxiety or if I am still actually a little lightheaded. So I don't know if it's a physical vs. mental cause. Has anyone else gone through this? I feel ridiculous asking these questions but they haunt me. I will certainly see my doctor again if necessary but would appreciate thoughts from those who really understand this illness. Sorry for the rant but I want to be as well as possible and I'm not sure what normal is anymore!

Yes, good information, all. I did have recent thyroid levels checked at CC during another workup. They are not free numbers, however. T3 was 132 (94-170), T4 was 5.7 (5.0-11.0) and TSH was 0.254 (0.400-5.500). My prescribing allergist would have done free levels but he is satisfied with these results for now. My endocrinologist thinks they are fine so long as the TSH stays above 0.1. (I had already started on Armour before I saw this endo. That is why she is not the prescribing doc). My rheumy is not big on it because my pre-Armour TSH was 1.5. He says it can make dysautonomia worse. Is that true? I sure don't want that. But I had hypo symptoms for years and until recently no doctor would treat me because the TSH was normal. However, the free T3 and T4 were both very low normal. I did check my resting vs. standing pulse. It frequently increases by as much as 20 points but not always. Resting pulse is 80-88. Maybe I don't qualify for official POTS, but perhaps I have 'semi-POTS' lol! I will continue my fluids, salt, yoga etc. and keep tabs on this crazy thing. I would rather not stop the Armour because it seems to be helping in so many other ways.

Hi everyone, When I had my TTT in July, my resting pulse was in the 70s. I have been noticing increased palpitations since then and my resting pulse is frequently over 100. BP has not changed. Does this mean I am developing POTS or could this be something else? It's a little scary, although I have read that other posters have even higher pulse rates! I am just so aware of my heart beat all the time. Incidentally, I have been on Armour thyroid 30 mg in the a.m. since May. But the pulse remains high in the evenings well after the T3 would have worn off. Has anybody else had tachycardia develop like this? Should I see my cardiologist? I have seen SO many doctors lately I was hoping for a little time off if you know what I mean.

Reporting good news on the forum is a selfless act. You can change someone's very life by giving them hope. Thank you for posting and I am wishing you the very best of health!

Well, I had to laugh. If I had a nickel for how many times I've heard 'but you look so good...' This is great information and it helps me a lot. And there is lots of hope tucked in. I think I'm on track with doing all the healthy things, plus I am now able to practice yoga three times a week. Little steps. I really appreciate the feedback, I love you guys!!!

Thank you, Simmy & Tearose. You are right, this illness seems to affect each person differently. I am having a real waker-upper regarding listening to my body, but that's a good thing. I took good health for granted for a long time. Right now I am just living in a constant state of uncertainty and I think that is what's really bothering me. I don't know whether to close my business altogether or hang on for awhile, or even to remotely think about working ever again. I am a self employed pet sitter and am using relief help right now. It is quite a shock because I was previously a very active person, as I imagine you all were as well. I appreciate your taking the time to answer me. It is comforting to know that there is someone out there who really and truly understands! My very best wishes.

Hello to all, After three miserable years, I was recently diagnosed with NMH and hypovolemia at the Cleveland Clinic. My symptoms have improved greatly since drinking 2 L of salt water daily, plus lifestyle changes. I still have mild lightheadedness and occasional nausea. I am taking doxepin 25 mg and 5 HTP 100 mg plus a multivitamin. I am currently not working, a job I love. I was reminded last week of how frail I really am when my hubby landed in the hospital with pneumonia and I relapsed under the stress. My question is: Does anyone ever get over this? My internist said that this may not be a life long thing. I haven't had the guts to ask my CC doctors, at the time I was just relieved to get a diagnosis. From reading these forums, I feel like I'm in for a long ride. Has anyone else improved to the point of being able to live a relatively normal life? I am very grateful to be feeling better, but at this point my function is pretty basic. Thanks for such a wonderful forum.

Absolutely! Nausea, in fact, was the first symptom I saw my PCP about. Along with it the lightheadedness, fatigue and weakness. I actually lost 10 lbs within three months (without trying) and could not gain it back then because of the nausea. I was a skeleton. This doctor kept sending me to gastro, always with negative test results. I felt like I was watching myself die. After three years of this garbage I referred myself to Cleveland Clinic Endocrinology who referred me to Rheumatology, where I have been diagnosed with dysautonomia and fibro, and am awaiting a cardio consult and tilt table test. In the meantime, I have been started on doxepin, and THAT is what knocked out the nausea. In three weeks I have gained several pounds and most importantly, I have an actual appetite, which is a known side effect. It has been a godsend.

I was born and raised in Akron and still live here. Plus, my doctor said that based on my history I have probably had dysautonomia all my life. I am amazed at how many of us live in OH!