songcanary

This is the essence of kindness, Tearose, you unveiled your experieces to others so as to spare someone else the hurt. I applaud you.

Ernie, We haven't met, but I just want to say HI from a fellow ballroom dancer. I am so happy that you are able to do this again. I miss it so much. But maybe one day... It was nice of you to post because it is good to hear success stories.

I'LL say they don't get it! I agree that we are feverish at a lower relative temp. And get this--once I was in the ER because of chills and tremors and asked the nurse what my temp was and she wouldn't tell me. She acted like she was hiding something, very weird. That led me to believe that she got a low reading and maybe didn't want to admit that I was right I am starting to feel a little better today. Thanks everyone.

I talked to my allergist about this the other day. He said he is willing to test me for it with a serum tryptase level. He said in his heart he doesn't want me to have it, because it can be pre-cancerous, but he also said that he thinks it might be more common in patients than we realize. I do hope your dr. can find some answers for you.

Yes, I've had the cold temp & tremors ER visits too. One time I told them my temp at home and the nurse just said 'that's not even high enough to sustain life!', and yet there I was, live indeed and trying to explain. No one believed me. At the time my temps were dropping into the 93s and 94s at home. I have been treated for hypothyroidism since May with Armour and I really thought that would help my temp, but it hasn't so much. It has helped in other ways, I have more energy and my hair finally stopped falling out. Issie, did you get a free T3 and free T4? That's the only way to tell, the TSH means nothing if you're not a good converter, which I am not. My dys forum has the very best friends in the world. Thank you all for your quick responses. I had to get my elderly dog to the vet and when I came home, there you were. Enko, I did drink hot tea before I left and now I still have my big coat on but I am way up to 97.2, woo hoo!

Does anyone else suffer from low temperatures? I was doing so much better for the last few months and now, out of the blue, I am chilled just like the old days. I took this reading with two separate thermometers. Until today I had stayed around 97.5 which was not great, but I felt pretty well. Now I'm pale, lightheaded and mentally confused and I'm freezing with lots of clothing on. Brings back BAD memories and I'm scared. BP 120/90 (high for me) and pulse 81. Yikes.

Enko, Don't be scared. My TTT was a piece of cake. I was diagnosed with orthostatic hypotension even though I was already on fluid & salt. I did not pass out or anything even close. You will be just fine, trust that they will take good care of you. I had the same fears because I was just desperate for relief as well. It was a tough two month wait but well worth it. Deep yoga breaths!

Godsgal, I am SO glad you posted this topic. I had been doing my own quiet research into this very thing a while back but got sidetracked along the way. I have multiple food allergies and I am really good about avoiding my trigger foods. But quite often I would have a reaction and know for a fact that I did not eat a known allergen. I would think 'what?????'. I have generalized itching and hives. As I am studying the diet I can see that this may be very helpful. There are many foods on this list that I eat because they aren't known allergens, but they sure do have the histamine! Looking forward to relief. Bless you.

No need to apologize for your rant, Lovebug. I loved it. There are a few doctors that I would like to quote you word for word right in their faces!!!

Good question. I think in high doses it might, I have read literature to support that. But in low doses, at least for me, it doesn't seem to be a problem. I take 25 mg at bedtime. My BP is the same as it has always been, about 100/70 give or take 10.

Oh yes. It seemed like the very day I started doxepin that I had a good appetite. It was like a miracle. Doxepin is a known appetite stimulant. I don't know if it was a coincidence or not, because I also started Armour thyroid at the same time. I still take both of those meds. I have gained all my weight back and then some. I started yoga in the fall, very cautiously, and it has made my legs in particular the strongest they have ever been. I did have to take it slow and many times I left class because I felt lightheaded and it really scared me. But with time I could tolerate more and more. Now I can enjoy a full class three days a week. I think yoga in particular has helped because the poses are beneficial to the autonomic system, kind of like I'm pumping blood more efficiently, if that makes sense!

I had the same loss of muscle tone and weight loss. In addition to extreme fatigue, chills, nausea. I thought I had Addison's disease at first, I was really scared and felt like I was watching myself die. I told that to my doctor and he thought I was just being melodramatic. NOT. When I finally got diagnosed with dysautonomia at the Cleveland Clinic, I was started on doxepin and 2L salt water, plus compression hose. I had also recently started Armour thyroid. I also quit working to rest my body. It really helped me to do that, I know for some it is not possible but I am self employed and had a thriving business I gave up; it was like a death, so hard. The site info helped me tremendously, it made sense of these senseless symptoms. Best of luck, keep searching for a doctor who will listen. In my case I had to switch more than once and I am SO glad I did, even though at the time I felt ridiculous.

I have an unbelievable number of food allergies. These all started a couple years before my dysautonomia symptoms got real bad. I finally saw my allergist who did oral provocation/neutralization testing and that was a godsend. It is common in Europe but not so much here, I am lucky to have this Dr, he is an M.D. I take sublingual food drops for 11 foods so I don't starve. I also find that Claritin can help blunt a bad reaction and I am also on doxepin for fibro, which is a good antihistamine as well. If I didn't use these three things I would be scratching myself raw with full body hives. Food allergies are horrible, I am truly suffering with this crap. My rheumatologist explained that I have central sensitization syndrome and I really think that explains why I'm hypersensitive to foods. I wish it would just go away!

Rach, I know when my cortisol levels were through the roof, I had terrible insomnia. I still struggle with it, but it's a little better lately. Stress causes cortisol to spike, and that will cause insomnia big time. In my case it was chronic, but I wonder if that is what is going on with you. I don't think there's a quick fix for it, but it sounds like you have the right attitude, just settle and let it run its course. I started yoga which was very helpful and got serious about my attitudes in general, more relaxed etc. Best wishes from a fellow worrier and I'm very glad your husband is on the mend.

It is my understanding that fibro is a type of dysautonomia. I have had fibro symptoms my whole life but did not get diagnosed till 1994. I did not have orthostatic problems until 2007. Even though I am on thyroid and fibro meds, I still have stiffness and fatigue and other diffuse symptoms that can't always be explained. I just chalk them all up to dys at this point.

Julie, I am so happy for you! May I ask exactly how much sodium were you taking before you quit? This has been a concern of mine, about the salt loading. But I quit 5 added grams for one week and the lightheadness came back. When I resumed salt I felt much better. I hate adding salt but it seems to help me. That and compression hose. I am so happy for your improvement; you are such a wealth of wisdom, I learn a lot from your comments.

Wow, I nearly posted about this same subject yesterday. I live in fear of having a repeat of my worst years. I have nearly the same story as the other posters. Even though I am better for now, I do have bad days and I am always thinking ahead about the 'what ifs'. I have been the ER route too, with clueless drs and it was horrible. I think the reference to post-traumatic stress is RIGHT ON. I have thought about seeing a counselor as well just to get some advice and get this off my chest. What I have done on the practical side is fill out emergency contact cards for my wallet and car. And I have considered getting a medical alert bracelet. I remember many years ago when we went out of the country for a vacation, I had our wills etc. updated and after I did that, I felt like we did all we could humanly do. So it boils down to just living and letting go. Even the healthiest people can get hit by a bus. So really, are we any more at risk than others? Before I got sick I never thought this way. But now I feel much more vulnerable and it's a hard feeling to shake. I totally understand this fear. Hopefully time will ease this scary feeling.

I totally understand your frustration. And the 'white knuckle' reference - I get it! I am different in that I found myself to be much more patient with people after I got sick. Even though I was always helpful and nice, now I have a much deeper compassion and understanding. It helps me to remember that we are ALL fighting some kind of battle, dysautonomia or not. I send my very best wishes to you in your journey.

I was not lucky. It was three years of constant nausea and lightheadedness. I am the same as Sarah4, I have had intermittent symptoms my whole life as well, and learned to live with them until I just could not function anymore. My doctor kept sending me to gastro because of the nausea. Many unnecessary tests. I finally referred myself to Cleveland Clinic and saw a very kind endocrinologist who referred me to rheumatology, and I got diagnosed on the spot. TTT and other tests followed to confirm. I am doing pretty well right now but I still live in fear of relapsing.

Tia, So glad you are feeling better. Drug reactions can really mess you up. Take special care and put that one on your DON'T list!

I know what you mean. It sounds like you may have had the hemodynamic test, and blood volume is normally done with it. I went over my test results and it clearly states that the blood volume portion of the test was not done due to the iodine allergy. The nurse told me that my EP was especially good at interpreting echo results so I assume she diagnosed the hypovolemia based on that, the hemodynamic test and my history. But I'm not sure how. I wish I could answer this better! But there is no question that I am feeling much better after resuming salt water. I love my salt water .

It was just over the heart, as I recall. Does the traditional blood volume test scan the whole body? I am trying to remember all the details but the whole day has turned pretty much into a blur at this point. I had a heart MRI with contrast as well, in a different room.

Hi Godsgal, In my case the symptoms were lightheadedness and major nausea. Traditionally, the blood volume test is done with injectable iodine, but I am allergic to iodine so they cancelled that one. My hemodynamic test was modified also by using Doppler echo and something called a '99mTc flow method' instead of the standard test. I still did have an injectable tracer but it wasn't iodine and they took tons of pix with a camera while I was on the table. My EP said she got all the info she needed with those tests, so my hypovolemia was diagnosed based on those results and my clinical symptoms. I will always wonder what my 'traditional' blood volume reading would have been.

I don't know which antibiotic you're on, but my husband broke out in full body hives when he took Leviquin. He had never had a reaction like that in his life but this was really awful. Most likely culprit is a drug reaction, not the infection itself.

So I have been curious as to why am I salt loading when my serum sodium level is high normal. As an experiment, I stopped adding salt to my 2L water one week ago. I was OK until yesterday morning when I started feeling lightheaded again and the rest of the day was pretty much trash. Then today the same thing happened. I resumed the sodium and perked right up. That is what happened when I originally started fluid/salt loading---I was washing walls within two hours! This drove me nuts as to why so I did some remedial research and read that dehydration and/or hypovolemia will cause an elevated sodium reading because it is high only relative to the total blood volume, and increasing hydration should correct it. I am like DUH. My most recent SS was before I was on this treatment and I was most certainly dehydrated at the time. I was later diagnosed as hypovolemic when I had my TTT. I just wonder what the reading would be now. I am sharing this because it helps me to remember things if I write them, and also to help any newbies who might be wondering about this subject. I just have to re-read things so many times to understand them---major brain fog happening here!