lavender

It's hard for me too to figure out dysautonomia symptoms from thyroid symptoms. Katherine, if beta blockers are used sometimes for a hyperthyroid, then to you think taking BBs could have a negative effect if you are hypOthyroid? I'm on meds for hypothyroidism and also on BBs.

This is really encouraging that you are feeling some relief on the BC!!! It's crazy how changing your hormones can effect things so much, in one way or another. Has anyone had the opposite results from BC? I took it a few years ago for a short time, because I was sick and my periods had quit. It ended up making me so so much worse.

Rachel, I agree, a fax might be a good idea. It would be nice if you could somehow bypass the other staff and talk with the doctor. I'm so sorry this is happening. how so very frustrating! hugs!

I had a CT scan done on Friday morning. I had to drink barium for it. I'm having a hard time recovering from it. Since the barium, two days ago, I'm just not hungry. If I eat very much or am on my feet at all my stomach gets pretty upset. my tummy is sore to touch. I'm not too worried yet because I am able to eat a little. I'm not sure at what point to be concerned. Has anyone had this trouble with barium? Any little thing makes my GI freak out. oops. I'm sorry this posted twice...

wow this is a good change! It will be interesting to see if people use the name change and if it helps the image of this horrid illness. I've been diagnosed with CFIDS.....or I guess ME, by some doctors. Others say I dont have it. I'm not sure. But I've always HATED the name. I always found the name embaressing because it just didn't go with how SICK I felt.

update. I talked to my other doctor the other day and he said I for sure have pooling. He said since I am young I can have pooling without chronic edema and leaky capillaries. He said that happens more in older people, where their blood vessels are older and worn out, making thier legs swollen and brownish. It was helpful that he seemed to agree with what I am thinging.

In doing regular CBC labs over the last few years, we are seeing that my potassium is almost always a little low. My vitamins have some potassium in them and my diet actually is quite high in potassium, so that's not the problem. My doctor said to try using a light salt made with potassium and we'll see changes my levels. He wondered if it may be a slight problem in my adrenals or kidneys causing some potassium loss. I havn't yet been back in to talk about the possability of POTS. Does POTS affect you potassium levels, or can low potassium affect POTS? Anyone here with ongoing low potassium? What have you found as the cause, or ways of fixing it? thanks!

So it's possible to have pooling in your legs, without chronic swelling and such? I don't know for sure if my legs pool but it sure feels like it. I can feel pressure in them at times when i stand. They are more purpley when standing or sitting with legs down. They feel better and I myself feel better when my legs are pretty level with the rest of me.

In talking with my doctor about my jump in heartrate and BP when standing, I asked him if it could be happening because of blood pooling in my legs when I stand...and if that could be part of the purpleness in my feet and legs, which is worse when upright. He said he didn't think it could be blood pooling because if that were happening it would cause my blood vessels in my legs to leak....causing swelling from fluid and signs of bleeding under the skin. Does that sound right? Does this happen with pooling?

Wow! Thanks for the suggestions! Great ideas! I hadn't thought to just cut the legs off a table, if I found the right one. I'll have to keep my eyes open. I'm sure I'll find the perfect thing eventually. thanks again!!

This is kinda a silly question. It's much easier for me to sit to do something than stand. I dont do a lot of cooking, but if I'm having a hard time standing in the kitchen, I often put everything down on the floor and work sitting down. It's easier for me to sit on the floor than in a chair, I think because in a chair my legs are hanging down. So anyway, I was thinking it would be great to have some kind of a low small table that I could sit on the floor and work at. I'd want it to be pretty low, something I could get wet or dirty and something smallish and light weight. Have you seen anything like this? any ideas of where I could look for this type of thing? I worked on baking a birthday cake for my sister today. I feel sort of silly baking on the floor.....but it works. I ran out of energy before I was done though! So my kitchen is a wreck! powdered suger and dirty dishes all over the floor! I'll clean it up tomarrow!

Thanks. I appreciate each reply. Can there be a connection between dysautonomia and some kind of immune system dysfunction? I have mostly worked with Rheum. drs, but I'm not sure they are the best doctor to see for dysautonomia....are they? What type of doctor would most likely be able to look at my entire picture....as I think everything going on it connected? Rhonda or Maggs, since your situation may be similar to mine, if you can think of any info, tips, suggestions, tests to look into or things you've learned that might help me, please pass them on!

Jenwic, I have no experiance with Florinef, so can't offer any help. I wanted to tell you my heart went out to you reading your post. I'm SORRY you are feeling this way. I will pray for some relief for you and direction medicine wise.

Sorry to bother all of you with so many questions. one question I have is kinda like Pickledfairy. I have a set of symptoms that I'm not sure could relate to dysautonomia or POTS. I started getting sick when I was about 9; 16 years ago. I'm trying to think of how to keep this brief. My biggest symptom is constant debilitating fatigue. The problems I've expained in my hands and feet are also constant and can be pretty major. Here's most of the others...they all come and go depending: jointpain, most all my joints, but no joint damage mottled skin rashes muscle weakness and tingling headaches low grade fever chills trouble breathing...getting enough air, pain in breathing (low DLCO) dizzyness, lightheaded nausia stomach and intestinal pain....sometimes feels like food just sits there for HOURS with loss of appitite (a lot of the time the pain gets worse and worse if I am standing or sitting up, but improves laying down) constipation diarrhea insomnia....worse if I've "overdone it", am overly tired, am uptight, or with hormone changes. In charting it the doctor says it looks like my circadian rhythm is "floating" cognative dysfunction swollen glands ringing in ears swollen purple eyelids my eyes get hot and sore and my nose dry when i am tachy hypothyroidism chemical and food sensitivities chest pain flushed cheeks trouble emptying bladder bp and hr swings when I'm really sick my periods are often irregular I've found a few things over the years that make my symptoms really flare up. exercise or too much activity, estrogens (xeno or phytoestogens or birth control), heat or too much sun, anything that boosts my immune system...echinacea, high doses of vit C, different herbs and vitamins doctors have given me. all of these things have a dramatic effect on my illness. They can cause me to become totally bedridden. Vascodilators also make things worse. Things that help some: rest rest rest, healthy eating, natural progesterone cream - if used at the right time, and immune suppressant meds. When I am on either methotrexate or humira, (both suppress or alter the immune system) I am more stable. It doesn't at all cure me but my pain is a lot less and I can go from, at my very best, being up for an hour and doing things like going to town not more that 2 or 3 times a week for not more that an hour....before I crash....to being up for 2 or 3 hours and being able to go to town almost every day for 1 to 2 hours. I still "crash" and have bad flare ups on the immune supressants but it doesn't happen near as often, last as long or get as bad. lately most doctors feel like I have some kind of autoimmune or undifferentiated collegan vascular disease...because of my symptoms and how I respond to the meds. But most of my lab work doesn't show that. So I guess my question is, do any of these symptoms sound familiar or not? And is there ever a connection between POTS or the autonomic system and the immune system. I know my immune system is involved in my illness and is overreactive. thanks again for your help. sorry this is long. I would give ANYTHING to get to the bottom of this.

My bp doesn't drop as my heartrate increases or i stand up, (which would make sense to me)...it always goes up. Anyone else like this?

Thanks! My blood pressure is only high when I stand up. sitting or laying down it's more like between 90/50 to 115/75, heart rate between 60 and 85. Standing up the numbers either leap up or slowly rise. I just recently got Propranolol, but I'm not sure I like how I feel on it. I'm not taking it right now, but I'll be talking with my doctor about it and trying it again. I've been sick lately and needed to make some other med changes, so I'm waiting to try the BB again after other things are more stable.

I took my bp today after standing up for a while. it was like 155/ 88, hr 124. I tried raising my arm without the cuff above my head and took my bp agian. I went up to 123/94 hr 133. the numbers dropped back down a bit after putting my arm down. (my laying down heart rate and bp are pretty normal) I also noticed that my hands are very purple when hanging down but my hand turned pretty pale when I had it raised up. Does this happen to anyone? I was curious to test this because I can always feel pressure rush up or down my arms if I have them above my head or hanging down.

cardiactec, I can relate to this struggle. It's so hard to deal with feeling constantly sick day in and day out. It can be so isolating in differnt ways. It's only harder when your doctors are unsure of what to do or just drop the ball, like you said. I think some of my depresion over the years has been grief over so many genuine losses in my life because on my unending illness. My illness has cost me a lot and I hate that. I think at times there is not way around that grief. I think it's important to proccess it. For me though its hard not to get stuck there. Lately the Lord is really teaching me how watch where my mind goes. I'm also realizing I need to learn to make the most of my days right now, even when I feel so awful and I feel like they are waisted in bed. It's a struggle for me to exept my life the way it is now, instead of just waiting for all of this to go away so I can live again. I didn't realize BBs can cause depression. Why does it? It's so hard to deal with this kind of depression...caused by meds and such.

So with how POTS (if I understand it right) effects your adrenal system, it that hard on your adrenals over time? Can it tire them out and cause more problems?

Thanks! So you think this is abnormal even though it doesn't happen all the time?? I guess I am a bit hesitent in telling my doctors some things because I just dont know whats "normal" anymore! I think I'm overly afraid of bringing up concerns with my doctors that turn out to be nothing or normal, after being told a few times by doctors that this is all in my head and that I WANT to be sick! (how crazy is that!) Know what I mean? Thanks! So you think this is abnormal even though it doesn't happen all the time?? I guess I am a bit hesitent in telling my doctors some things because I just dont know whats "normal" anymore! I think I'm overly afraid of bringing up concerns with my doctors that turn out to be nothing or normal, after being told a few times by doctors that this is all in my head and that I WANT to be sick! (how crazy is that!) Know what I mean?

One thing I've noticed over the years is I sometimes have trouble urinating...either taking a while to get started, or having trouble empting my bladder all the way. Rather than being able to go to the bathroom easily, it just dribbles slowly, and stops too soon. I only really notcie it though if I've waited too long to go to the bathroom and my bladder is really full or if I'm really uptight. I dont think I've ever mentioned this to a doctor because I always have so many other bigger issues I need to discuss. It doesn't really cause me major problems other than when I had an appendectomy. But in reading about the autonomic nervous system I'm wondering if maybe it's connected and should be mentioned. Should I consider this an issue if it doesn't happen all the time?

I really appreciate all of your help and your listening. Yes it is true that my doctors at this point are mostly just doing trial and error with different meds. It's really frustrating, but after years of just not knowing what is really wrong, i think they are not sure what else to do. They say that over the years that either my illness will evolve and it will become more clear what it is, or it will just go away. (dont really think so!) I know I need a better doctor, but after 15 plus years or seeing doctor after doctor, and not getting very far, I guess I'm burned out and dont have much hope in anything different. They all run a bunch of tests then eventually tell me they don't know what it wrong or they diagnose me with something that eventually proves to be wrong. I live in alaska which makes my choice of doctors kind of limited. I've gone to bigger specialized hospitals in the lower 48 states 3 times. Each time I didn't get anywhere. It's hard. I come home so crushed. this illness has totally taken over my life and yet there is "nothing wrong!" I've worked with all sorts of different doctors in alaska. When I pressure my doctors here that I NEED more help and a more specialized doctor, they tell me they just aren't sure where to send me and that I need to patient! Luckely, they are finally surriously looking for doctor who may be of help. They know I need someone who will look beyond the usual and run beyond the usual tests. And someone who will look at the WHOLE picture. But they aren't sure who that should be and even what specialty. I am usually refurred to Rhuematolagist, I'm not sure if that is what I need though. It's so hard for me at this point to be very pushy with them. I think after so many years of being SO sick but having so many test return normal, and some doctors telling me it is in my head, I struggle to feel like this is a valid illness, like it's worth bothering doctors with. Or that there is any hope in actually getting answers someday. I think I'm also afraid that if they do figure it out it will be an illness that isn't respected in the medical world. It's hard for me to not feel stupid going from doctor to doctor trying to explain how sick I feel, when they (mostly) can't see it and don't get it, or dont know what to do. In learning about POTS there are some ways that it makes a lot of sense that it could be what is wrong but like other illnesses we've looked into there are things that just don't line up, so I guess I am hesitant to bring up yet another illness to my doctor that I want to be tested for. I also hate that when I go into my doctor and let them see how frustrated I am and get pushy about NEEDING answers, they put in my chart that I am depressed! I'm not depressed, just desperate and frustrated!! Sorry this is long. I hate being at a loss as to what to do. at this point I'm going to take a break from the BB for a little while. I'll probably try it again in a few weeks and keep documenting what is happening with my symptoms on and off of it, then I'll go talk to my doctor. He said he would be thinking about the possibility of my illness being autonimoc related. So we'll see if he puts though into it...... And maybe I'll talk to him about POTS......not sure yet!

So, I've been taking Propranolol for a couple weeks. (not every day) It seems to make my orthostatic heartrate and BP a bit more "normal" but I'm not sure it makes me feel any better. Does propran cause headaches and more fatigue for anyone? What about weakness? I think it's causing headaches for me as it wears off. I've been SO up and down physically lately, that it is hard for me to tell what the med is doing....good or bad....and what is just me feeling sick. Is it possible to over time get used the the Propran and not have side affects?

Thanks Dizzy, I'm not sure yet if I'll ask my doctor about blood volune testing. I was first wondering if the test was simple and commonly done.....doesn't sound like it. I'm not sure my doctor would know anything about it.

Tyka, I'm sorry you are in this pain. Joint pain is no fun! Is joint pain ever associated with Dysautonomia? One thing that has helped my joint pain is taking flax oil regularly. I'm not sure if something simple like this would help you...depends on the cause.