WyomingGal

I have had positive ANA's over the last 7 years. Whenever I was feeling really terrible for whatever reason, but probably autoimmune stuff, my ANA would be positive. Then it would go down a month or two later. I have seem numerous rheumatologists, before POTS diagnosis, who couldnt make sense of it. I think it flares in times of stress.

I have been on armour for about two weeks. I just seemed to plateau with my POTS recovery. I am already noticing a huge improvement. I have more energy and recover a little bit faster than I did before, plus my sleep is better. It is weird to adjust to the med, because sometimes I get some palpitations and I have to remind myself that my body is adjusting and trying to use something it has been deprived of for awhile now. I hope to see more improvement in the coming weeks!

I have found that I have to take birth control to help control my PMS symptoms. I am now on Seasonique (it takes a few months time to adjust) but it helps cut back PMS which makes my POTS symptoms worse.

That makes a lot of sense with the swelling inside the head. That has got to be it. I guess since I get dizzy sometimes anyway, when the sinuses will I get it more often. I feel the dizziness in my eyes (if that makes any sense!). Like if I can close my eyes for a bit to give them a break, it helps a little bit.

I was wondering if anyone is feeling kinda crappy this time of year. I was looking forward to the cooler weather, but my head is saying something else. I do have sore temples, eye pain, fatigue, and maybe it is allergies. I have noticed I am getting dizzy. Does anyone get dizzy more often when the weather changes or when you have some sinus/allergy trouble?

I am sorry this happened, it sounds stressful and no one needs that. She sounds like a bitter lady and that is her loss. I thought this story might help you out. The energy lady I work with said sometimes when people say things that really get to us, just say, "Thanks for sharing." And move on. I really liked it. Just let them say it and move on...leave them to dissect the situation. Keep on being your awesome, working self! : )

I would be cautious with any tinctures. Start slow and see how you feel, also check to make sure they don't interact with any medication you might be on. I have heard some people say that pure essential oils (therapeutic grade), like young living, have saved their lives. If you are open to those things, then I absolutely think they will help if you believe in it. I have had some energy work done recently, working on my chakras, etc and I do think it has helped. If anything it has given me a way to find some peace. I am going to be out on a limb here and just share this, if it's not for you, that's ok too: The energy worker said I had beings attached to my aura, which can suck your energy. She got rid of them and I swear I felt something. If anything I have learned to find more spirituality in my life, like noticing the simple things in life, like a breeze on your face, a beautiful day, etc. It's important to work on your mind too, I would at least talk to a holistic worker or energy worker, and it may spark your interest. When I worked on my anxiety, a biofeedback lady told me anxiety is like a ladder. It can be really quick to go up, but takes time to go back down. Try finding a mantra. I use to laugh at that thought, but tried it and it brings me comfort!

I am really on this thyroid kick right now, since finding out my TSH is high. I had a tilt done at Mayo in February that was positive, I lasted about 4 minutes. Although the doctor said I had mild autonomic neuropathy, as seen in the QSART, I was wondering if hypothyroidism can contribute to my poor performance, too. Anyone have thoughts on this? Would untreated hypothyroidism cause poor performance on the tilt? I guess I am trying to find evidence that maybe my POTS isn't as bad as I think, it is just compounded by other issues : ) Also, anyone take armour? Did your POTS symptoms get aggravated when starting medication?

I am so glad you said that! I too cannot tolerate antihistamines. I would take them and get hives and have to get a epi-shot. A doctor did recommend Nasal Crom. It's a nose spray and I think it blocks histamine receptors, but not totally sure. It is not an antihistamine but works for allergies for me. They have it at walgreen's, kind of pricy but totally worth it. Other pharmacies may have it behind the counter. I use it in spring and fall to keep the allergies at bay, although it takes awhile to work. Also a neti-pot or similar item helps keep the nasal passages clean. I have never met anyone else who is allergic to antihistamines-pretty weird. I had an actual allergy test and it came back positive for the antihistamines.

Maybe this will help you some... I did fine on Zoloft for about 7 years. I had anxiety, although maybe it was dysautonomia? Anyway, whenever I tried to get off of it I would get symptoms again. When I came down with "POTS" I had been off of Zoloft for about 2 months. I think my body needs serotonin. I always worry about being on an anti-depressant, but she said "you can't think of it like that. a diabetic needs insulin and you may need this drug and that ok!"

I think sometimes we have to make our own decisions-the doc just dont always get it. The nurse said "You need to take the full dose" and I thought there is no freaking way I will do that! My endo prescribed me armour 30mg, but I am starting around 10-15mg for awhile without telling him, thats just how I know it needs to be done. I am sure they would say, 30mg is a small dose, but not for me! While it has only been two days, I don't have nausea like I did on Levoxyl and hopefully my joints will be happier and not ache! Anyone get odd dreams while starting thyroid meds? I have been sleeping good, but don't know if it is because I am exhausted.

Loving this thread. I called them back today an said I will not take Levoxyl, I am having a reaction. I did ask for armour to try, but now I am worrying about that and tachycardia! I am actually thinking he might not even let me take it just because he probably prefers the synthetics. I have not heard back from the doctor and that makes me mad. I am sure they are thinking that this crazy girl is not taking her medication! I stopped it today and feel way better. I do feel better about my energy though. I thought I was not doing as well as I should have, but now that I have read these posts, I am thinking that I have pushed through this pretty well...I am so ready to feel better. I start student teaching in a couple of weeks and want to get started on a medication. 8 weeks of student teaching and I am done with my master's!

Glad that author is having such a great impact! I call it my 'Bible'. The books also come on tapes and it is really nice to listen to his voice and instruction.

I am hypo and have a goiter. My TSH was 6.94 . I think I am going to call tomorrow and demand something else! I would really like to try armour. Thanks for your posts!

I have now been on Levoxyl for three days and I am pretty sure I hate it. I am supposed to take 50mcg, but am only taking half. I called the doctor and they said I need to take the full dose, but that seems like it will just make me feel even worse! I don't think my doctor really understands my situation. How long do I give it? The first day I felt weird, then had nausea in the afternoon and totally crashed, exhausted. That happened the second day too. Now on the third day I had the worst joint aches, especially in my hips and knees which is weird for me. Any thoughts? What thyroid meds do you take? Is armour more appropriate since it has T3 and T4? Or synthroid to try a different brand?

You have to learn to redefine your own personal "normal". What is it that you want to do to that is "normal"? I have learned to accept some limitations and to listen to my body. But sometimes you need to remind yourself that movement is good for the body. We are not meant to sit around. Even if you feel bad, try a five minute walk down the street. Also, time helps a lot. There are good days and bad days, but you cannot give up fighting to get better, because over time you will slowly notice more good days than bad days. I have also found a lot of help with therapy, energy work, acupuncture, diet (gluten free, sensitivties), and meaningful friendships that add to my life. I don't do drama anymore! You have to be willing to try new things and give them time to see if you feel better. I also find a lot of comfort in books such as Wherever you Go There You Are by Jon Kabat-Zinn, The Power of Now by Eckhart Tolle, and Taking Charge of Your Own Health by Lisa Hall. An understanding doctor also helps. I have seen some who make me depressed and cry, others that I stick with give me hope and treatment options based on their informed opinions. Another thing is to not compare yourself to others. You are your own person and you only have your life to live. You do not know how others are feeling so don't compare yourself with them. Just know you are doing your best to cope and heal. I read this great little story out of a book by Pema Chodron. She had a friend send her a dog tag that said "Sit. Stay. Heal." (get it? heal and heel?) It helps reinforce the idea of being mindful and being in the present moment, non-judgementally. When I get anxiety, whether it is my POTS or what, I say to myself "Sit.....Stay.....Heal" and it helps me to calm down and not try to flee and escape the moment. Sorry if these ideas don't appeal to you. They never did to me before POTS, but I really have found a lot of this to be true and helpful so I thought I would share! The health of your mind is just as important as your body : )

Maiysa, Thank you so much for your reply! It really makes me feel much better. It also got me thinking-so thanks! After reading it I send my blood work from my endo (who knows I have POTS) to my neurologist. Also I saw that you were diagnosed at Mayo in Scottsdale-I went there in February to see Dr. Goodman. Did your POTS change after getting all your thyroid hormones back to normal? The eating in the morning advice sounds good. I also asked my pharmacist and she said waiting 30 minutes should be enough if I need to eat right when I get up, which I usually do. The only problem is that I take midodrine an hour before getting out of bed in the morning. The pharmacist did say I can take Levoxyl and Midodrine in the morning together and wait about an hour to eat and it should be okay. I am checking all of these medication and vitamin questions with three different people, ha. Kinda off topic, but schmanser made me thing of it...have you see the show The Big C with Laura Linney? It is funny, touching, and refreshing.

I was recently prescribed Levoxyl 50mcg for hypothyroidism and goiter. Anyone take this? Thoughts? I am a bit nervous to start it!

I was told I had POTS about two years before I found out I had "CFS". I was doing okay with my POTS stuff then for whatever reason I got insanely dizzy and tired last December. A chiropractic doctor ran some tests and saw that my EBV titers were really high, both for past and current infection. Now, this would be like the "3rd" time that I have had an epstein barr infection. So who really knows! I have no other past titers to compare it to, but glad I have one now so I can find my normal at some point. In college I did notice that I got sick more often and just felt crappy more than any of my other friends, although I kept up with them pretty well. I think i got to a point where my body couldn't keep carrying on anymore. With a hair analysis, ALCAT diet, moderate exercise (like 10-20 minutes max), and supplements I have built my body up more My doctor had the same issues in her 20's (about 20 years ago) and went from doctor to doctor and even had unnecessary surgeries. She said once I build myself up and don't overdo it, in about a year I should feel better than I have ever felt before So there's hope! I do agree with some of your statements, although addressing my POTS didn't cure my chronic fatigue. I do appreciate your thoughts though. I do feel stuck now, and it turns out my thyroid is out of whack. So have I had this since December when I started to feel crappy? Don't think I will ever know. It is all such a mystery! It seems like these problems compound, like having EBV, POTS, and hypothyroidism...of course I am going to have chronic fatigue and not recover as well as others. I played 45 minutes of tennis on Sunday, and my body is saying you overdid it...I knew it, and over time, I learn to be nicer to my body and support it as best as I can. For those that do have CFS, here's another point that my doctor made. She has a great sense of humor and said that the good news is when I am older and my friends bodies start to ache and fall apart, and they complain, I can say, "Stop being a such a baby, I have been dealing with this for twenty years!" : )

MomtoGiuliana- That is so comforting to hear, thanks! I am going to feel worse before I feel better as I get a thyroid medication into my system...or will I notice a slow improvement in my symptoms...Any thoughts or your experience?

I live in Cody, WY, outside of the east entrance to the park. Moved here a couple of years ago and there's still sooo much to see! Haven't been to alpine, looked it up though and seems amazing! Thanks for your response! Did you have POTS first, or hypothyroidism? When you go your TSH to a comfortable level, did you feel better in any way?

I recently found out my TSH is high (I also have a goiter). The doctor is running more tests to get more specifics. So I have to wait a week or so more. I feel like my POTS symptoms have gotten worse, especially in regard to eating. I have to eat every 1.5-2 hours, and it is getting really annoying and uncomfortable. Also, I am relying more on my compression stockings to get through my day. Does anyone have hypothyroidism and notice the effects it may have on your dysautonomia? When you start to treat the thryoid, did you notice and overall improvement in your health and well-being? Any thoughts or experiences are appreciated! I can't wait for the results!

Since we are talking about salt, I wanted to ask: What kind of salt do you use? Sea salt? Table Salt? I have been worrying that since I am using iodized sea salt, could I be getting too much iodine?

I saw Janice Gilden, too. My parents still live in chicago, so I went back there to figure out what was happening to me about 2 years ago. I was referred to Dr. Gilden. While she did help me get back on my feet, I tried contacting her multiple times with questions and never got any replies. I feel as though she is just too busy and has too many patients to give me the time I would like. I have not spoken to her since. Also, there were some abnormal thyroid issues going on then that she said she did not know what they meant. It seemed pretty obvious to me and other doctors and she is an endocrinologist and should know those things. I am not saying to not see her, she may work great for some people and that is all that matters, just giving my experience. I do have a couple of friends in the that area who also have dysautonomia. They have given me the names of Dr. Saurabh Shah, a cardiac electrophysiologist, at the Illinois Heart and Vascular. Also, there is a Dr. Somberg in Lake Bluff, IL who is apparently very knowledgable about blood pressure stuff. I have not seen either of them, but would go to them.

You can call the neurology department and ask to speak to his nurse. They will either transfer you or give you a call back. I guess I should specify that I haven't actually talked to him on the phone (maybe if you really insisted you could?). But you just ask his nurse any questions and she will check with him and give you a call back.