songcanary

I had symptoms for three years before getting diagnosed so I became very good at hiding my problem. But finally I was too ill to continue working and I was forced to call my clients and tell them that I could no longer help them. It killed me. But then something strange and wonderful happened. I got flowers, I got phone calls, I got cards. I am working for the most wonderful, understanding people in the world. After I finally got diagnosed I stayed off work for another six months so I could evaluate my treatment. I have just recently started working again and I hope I am able to continue. What I learned is that it was a tremendous relief to finally let the cat out of the bag. And to find out that people really do want to help if they can. It is not such a bad thing to ask for support, it makes us human. I mean, if someone else had this condition I would be the first one to offer help and I have done it many times in the past. So don't be afraid to air the laundry, it might even have unexpected benefits.

Dani, please post how this goes. My husband has had these symptoms for 10 YRS (not a typo) and he is miserable. He has been CT'd and scoped out the wazoo and his allergy meds don't work, either. He has been on all of them at one point or another. I have suspected food allergies all along and he did test positive for dairy, wheat, eggs and yeast but he did not respond to an elimination diet---I cannot figure out why. He swears he did not break the diet but I'm not so sure. Anyway, food allergies are worth checking out in your case, especially if your symptoms are not seasonal. Best of luck.

Dani, are you on any meds? I felt the exact same way for three years until I started on doxepin, Armour thyroid and forcing fluids. I could no longer work at all, and I couldn't even keep up the house. I cannot imagine caring for a baby in the shape I was in. I could barely feed my dog. It is so easy to say just keep trying, that gets old after awhile, I know because I hated hearing it. BUT it did help me to have itty bitty goals. Some days I was happy just to have gotten out of bed. This may sound silly but I did it for my dog and my parrots. They needed me and somehow I found the strength to care for them, even if minimally. My husband, sad to say, did not get a clue until I started dragging him to my dr appts, mostly because I was so weak. THEN he realized hey, maybe she really IS sick. Now I have good support from him but it was like pulling teeth. Anyway, perhaps you need a med adjustment, something so simple can make a huge difference. You couldn't pry my meds away at this point . Hang in there for your baby and my very best wishes to you.

I don't know what is causing it, but your description of being 'above my body and watching it all going on' is me. I felt that way for three years. After I got on doxepin/salt/fluids/Armour I felt a little better and started back to the gym as well, but this time with gentle yoga. Even at that, there were many times when I would start the class and get that same feeling and I got up and left. And I mean MANY times. Very gradually, I was able to tolerate a full class. So I wonder if maybe your workouts, while very small as you say, really are a little too much right now. Or maybe the wrong type? I thought the same about myself, how could this little bit be too much? But it was. Try backing off a little and I hope this helps you. I understand how frustrating it is to have relapses.

Lieze, I can't tolerate any of the ensure-type drinks because they all have high fructose corn syrup. And corn is one of my worst allergens. Any chance it could be something like that?

TBMR, I think she is referring to 'Some Out of the Box Thinking - Need some Feedback', Aug 28 2010, and also 'More on Aldosterone and Renin', Sept 1 2010. I did a forum search and found them. I remember reading them at the time but it was a little over my head. Now I'm ready to dig in LOL.

My dysautonomia symptoms greatly worsened when perimenopause kicked in. Funny thing is, my hubby is the one who made the connection. I did try bioidentical hormone balancing but it didn't make a difference, I kept getting worse. It was the salt/fluid loading/doxepin/Armour thyroid that really helped me. But I do think that menopause is what sent me over the edge in the first place and it may be highly underrated as a trigger! Not for wimps to be sure

Thanks for the replies. I have re-read them many times and I'm going to have to chew on this for awhile. But I'll get it. Eventually Wow, it's complicated.

On my initial visit with the rheumy who diagnosed me with dysautonomia, I asked him about this. I said that based on the normal serum reading, doesn't that mean I don't have a salt related problem? He said not necessarily. I did not question him further because the appt was already long at that point and he is otherwise a great guy who has literally saved my life. But I am still clueless as to the reason and wonder if any of you have the answer? I can usually figure out things like that but I gotta say this one has me stumped. I just wish I understood the connection between the serum reading and the illness, if there is any.

Libby, I was just like you. I 'blamed' myself for strange symptoms, thought I was just weird. I finally got diagnosed with dysautonomia in July 2010 after literally decades of having random symptoms. But after three years of lightheadness and nausea that caused a 15 lb weight loss I got really scared. My PCP blew me off the whole time but I referred myself to Cleveland Clinic where I finally got help. I agree with Sue, you do have symptoms of B12 deficiency, I did as well. I remember my grandmother used to say, 'you can have more than one thing wrong, you know!'. And she was so right. Keep up your quest, and best wishes.

Oh honeybun, itching, hives and puffy face? Food allergy IMHO. I have been there and still doing it. I have a million of them. It is hubby, actually, who has had the intermittent angioedema and we still can't isolate the specific food(s). It's tricky. But with your symptoms I would seriously consider it. Best of luck, it can be a real ride.

I have been wanting to ask the same question. My resting BP is 90/60. When I feel my worst it could be up or down, there is no set pattern. From what I have read, it seems to be a blood volume issue. I did not have the traditional blood volume test because I am allergic to iodine. But the salt and fluid loading works for me.

I just love this. When I was first symptomatic and got too sick to walk my dog, I thought my whole world was ending. This is so inspiring and I am so happy for you. Go girl!

My grandmother raised me and she and I were best friends. I cannot tell you how many times she fainted over the years. Plus, she had frequent bouts of diarrhea. And those were the symptoms I KNEW about. As I look back, these episodes were likely triggered by stress and she had plenty. She would always smile and make some excuse because she didn't want to scare me, bless her heart. This wonderful woman lived to be 85 years old and was active and happy till she had a hemorrhagic stroke. I think she may have had some form of dys, it just makes sense after reflecting on her history. I know very little about my parents' medical history but what I do know would make me suspicious of dys in at least my mother. If I can be half the woman my grandmother was then I will be blessed. And 85 years, well I'd take that any day!

I had the same questions before my TTT, I was already salt and fluid loading. The nurse told me that they take this into consideration when they do the test. I did flunk anyway if it's any consolation.

I hear ya. That temp thing is a pet peeve of mine. When I was at my worst one year ago, my PCP didn't believe me when I told him my temp was 94.5. Also, in the ER the nurse said 'that's not even high enough to sustain life'. Well, I was alive alright. Miserable but alive. Now I'm thrilled if I'm anywhere near 97! Feel better soon.

Yuliya, I wish some doctors could walk in our shoes for just a day. I bet most of them would cry like babies. I also have insomnia and I take doxepin. It is not a sleeping pill but it does help. It costs four bucks copay. There must be something she could prescribe that won't cost an arm and a leg. I quit crying and screaming once I got a little sleep I also take OTC 5HTP 200 mg, both of these from my rheumy. Now at least you have a dx and that's progress. Seems like we have to scrap for everything we get so just keep at it, you'll get there. Many hugs.

And to think I was oh so proud of myself for getting down 2 liters! Interesting comment about mast cell. I am suspicious of it myself mostly because I have an unbelievable number of food allergies and I do have many of the other symptoms, although not all. Also, even I missed my salt so I am back on it. Thanks to you both

Miriam, thank you. I think I'll make an appt with the rheumy to report these new symptoms. Your OTC suggestions are good, I'm new to the world of the dry and irritated. And you're right, estrogen is an issue, I'm newly menopausal. I thought I could take a break from seeing doctors till spring but here we go Many thanks, Marsha

Hello everyone, I have NMH and was doing pretty well until a few weeks ago when I started having intermittent episodes of mouth and nose dryness. Then came the constipation. Also, my throat feels dry. All the symptoms are constant now. A few months ago I was prescribed a cream for vaginal dryness as well. It works ok but not super. The house is humidified, it is not dry skin. Does anyone out there have Sjogren's and do these symptoms sound like it? My rheumy reviewed my lab work in May 2010 and ordered a SM AB and SM/RNP AB (I don't know what they are) he said to rule out certain kinds of connective tissue disease if I remember correctly but I'm not sure. Results were negative. This dryness is different from anything I've ever had before, it's really uncomfortable. It is a long shot, but can 5g salt/2L water daily cause this? I seriously doubt it but I did stop the salt yesterday to see what happens. So far no difference. Thoughts on this?

Hi, I share the same symptoms; I have gotten so cold that I visibly shook and my temp has been as low as 94.0. I suspected thyroid for a long time but docs kept telling me TSH was normal. Well, it was dead on normal at 1.50 but I finally got a doc to check my free T3 and free T4. Both were low normal. I started an empirical trial of Armour thyroid in May and it has made all the difference in the world. I can usually hold a mid day temp of 97.5 which is a godsend. Just a thought.

Oh I think there's a connection, but it's just my opinion. I have both NMH and fibro. Can't diagnose either one with bloodwork, but certain other things can be ruled out. I manage my fibro with doxepin & 5HTP, gentle yoga and lifestyle changes like not trying to be everything to everyone LOL. Seriously, that has made a difference although it is a tall order. Stress reduction is a big, big help in managing fibro. Best wishes!

I have narrow pulse pressure in the morning before starting my ritual (2 L salt water daily), it is usually 90/60 or so upon rising. It comes up about an hour later to 110/70 or thereabouts and remains there or sometimes higher during the day. I agree with Firewatcher that it is probably low blood volume, I was diagnosed with that at the same time I had my TTT. Since I've been pushing the fluids I haven't felt too bad, but I do have occasional relapses and I just have to wonder why??? I understand your frustration and if you get some answers please share. Best wishes for your cardio visit.

Brings back memories--BAD ones. I have had several of these shaking episodes, four times to the ER. But of course by the time I got there I had stabilized. The intial one was after walking on a treadmill at PT. And I was only on there five minutes and going really slowly. I felt nauseated and flushed and asked the PT to take my vitals and they were normal. But then the shaking started and I felt horribly cold and it got so bad they called an ambulance. I was shaking the table and then the gurney as well. I don't know what my temp was then, but when it happened at home my temp has been as low as 94.5. My idiot GP actually had the nerve to suggest that either my thermometer was broken or I didn't know how to use it. Excuse me but I have had a career in health care for the last 25 years and he knew that. Thermometers I can handle. I never got an explanation from any of my docs, but in my heart I feel it was due at least in part to adrenal insufficiency. I had so many of the symptoms; profound weight loss, nausea, weakness, low blood pressure. I have not had a shaking spell since I started on doxepin, Armour thyroid and salt water. These all happened within the same month. So I don't know if one or all of them made the difference but I am not tipping the boat at this point! I do know that the Armour has brought my temp back up to a reliable 97.5 during the day which is a great relief. I would LOVE to know exactly what triggered these episodes in me. I can deal with pretty much anything if I know the reason behind it. But so much of this illness is a mystery--it is frustrating at best.

I am so mad for you I could spit. Same thing happened to me for three years. My primary doc kept blowing me off and sending me to the gastro because my worst symptom was nausea. But it was in a tie race with the lightheadedness, appetite loss (duh),flushing, body temp of 95.0 in the middle of the day, profound weakness, blurry vision etc. He even had the nerve to state that 'you'll probably feel better tomorrow. Because you ALWAYS DO'. Sure, I could manage the occasional rally because I'm tough like you. But they didn't last and that doesn't mean I'm well. Cripes!!! Hang in there sweetie and hopefully your friend will get you in with a decent doc. We all need an angel now and then, maybe he's yours. If not, press on. I got help at the Cleveland Clinic but I referred myself. Best thing I ever did. My heart goes out to you.