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Everything posted by dkd

  1. This is unrelated to dysautonomia but when I was pregnant with my daughter, I was having premature labor and in the hospital. They tried to give me a medication to decrease the contractions, but it's something that increases heart rate so if your heart rate reaches a certain level, they can't give you anymore medication. I can't remember exactly my HR, but I remember my BP being 70/35 and I asked the nurse "how low does it have to get before you die?" She didn't give me an answer.
  2. BUN and creatinine are usually elevated in dehydration, so I'm thinking that's what you're thinking of. Also your hematocrit can be higher due to lower plasma volume. At least they gave you some fluids anyway. So sorry to hear that you aren't feeling any better. I was hoping after you got those new doctors they were going to help you more
  3. I take 2.5 also. My doc told me to bump it up to 5 if I wanted to but it gave me major goosebumps and tingly head, so I just kept it at 2.5.
  4. There's pinned topic at the top of the forum about a brochure for doctors. Silly me, I can't seem to copy and paste the link--but it's at the top of the forum page, third topic down "doctor education project".
  5. Now that she knows what to expect maybe she won't be so anxious the next time--hopefully.
  6. Revisting my thread---Last Friday was FREE FOOD at work so I couldn't pass that up, right??? We had sub sandwiches and big cookies and pizza-- I totally glutened out--haha. So, my itching returned, I felt bad, bloated, constipated, stomach pains. I don't think I need to be tested. I'm pretty sure I'm allergic or intolerant. I'm just now feeling better today. I don't think it affected my other dysautonomia symptoms, but it definitely affected my body. So back to gluten free for me!!
  7. Honestly, because everyone is so different, the only real way to know how it will affect you is to try it. I tried Lexapro and it made me worse. It intensified my symptoms a lot. My primary care then gave me samples of Cymbalta to try and I haven't tried it yet. I keep waiting for a day when I can just stay home and not have to go anywhere to see how it affects me, but it seems I can't find a day that I just have nothing to do.
  8. Sorry your apt didn't go well. I've had so many of those too and I know how disappointing it is. I was diagnosed by an EP, so my opinion is go to the EP The regular cardiologist that I saw didn't pick up on the dysautonomia at all, but the EP saw it right away from all of the data that the regular cardio had seen also. I know how horrible it is to go into an appointment thinking this will finally be the 'one' where they have the answers and you can feel better soon, and then you leave without anything and you're just the same.
  9. All of my 'crashes' or 'spells' have been while sitting or lying down with the same symptoms that you described. Haven't had one since starting beta blocker and midodrine though--knock wood!!! My cardiologist didn't offer any explanation of why it happens when lying down. I've had other doctors says it doesn't make sense that it's dysautonomia if it happens when lying down (I guess they think you can only have symptoms when standing???)
  10. I have had 2 emgs on my arms in the last 3 or so years and they only showed mild carpal tunnel in both hands. I have numbness all the time in my left index and middle fingers and tingling in left hand when I lie down at night. I don't think it's carpal tunnel and I don't think it's dysautonomia related. I do have degenerative discs and stenosis in my neck. One neurologist thinks that is the cause. Another neuro says my neck looks normal for someone my age (49) and doesn't think it's the cause, but he did not offer any other suggestions. The emg itself can be slightly painful--and expensive. Have you had an MRI of your neck? Also, I see in your sig line that you have Raynaud's. Can that cause tingling?? When I had my first emg, I was having terrible pain all down my left arm for about 3 months (following a flu shot-and pre-dysautonomia). The next day after the emg, my arm pain was 80% better. I don't know if something about the test zapped my nerves somewhat back to normal or what. I told the neuro and he said some people have told him that but he had no explanation for it. When I went for the second one, I was paranoid that it would make the pain come back (weird, I know) but luckily it did not! So, I don't know if the test was helpful at all in my situation, except the first one helped with my pain.
  11. Mine is more like a pressure/tightness-like my lungs can't expand enough. I feel it all the way from the bottom of my sternum up into my throat. I wonder if it's muscle related? Like a muscle cramp??? It's mostly when I stand, but can be when sitting also. I don't have it when lying down or when I get up in the morning. I had a pulmonary function test at my regular doctor's office and it said "suggestive of neuromuscular disease" so she sent me to a pulmonologist. He repeated the test and said it was normal-???? So, I just gave up on trying to figure it out. I did buy a finger pulse-oximeter that measures your oxygen level on your fingertip and mine is always ok--so that gives me some peace of mind that I'm probably ok even though I feel like crap-haha.
  12. My primary care dr is not very knowledgable (haha) so she probably couldn't help me (she hasn't so far). I really need to find a new doctor. Thanks for the info everyone!!
  13. Thanks everyone for sharing your experience. I'm still sticking to it though it's hard when I go out to eat. I thought I was doing ok a couple of nights ago by ordering pad thai (rice noodles) but it must have had something with gluten in it (soy sauce maybe???) The main thing I was trying it for was an itchy rash on both sides of my abdomen, right above my hip bones. That seems to be better, so I was hoping for some relief of my dysautonomia symptoms also, but I haven't noticed any yet.
  14. Sorry, what kind of doctor can diagnose EDS?
  15. Have you called your neurologist to ask them about it??? I do have muscle twitching off and on. Each body part that it affects seems to last about two weeks. I've had them in my back, eyelids, calf, thigh, different places, even in my groin area (that's really weird too ). Yesterday it started in my right hand pinky finger. It is actually moving where I can see it. Usually it's a muscle that's pretty deep so I don't see it, only feel it. It comes and goes throughout the day. I was going to go to the doctor when it was in my back and then suddenly it just quit. I had a pulmonary test last year that was "suggestive of neuromuscular disease" . I was sent to a consulting neurologist and he did not think I had anything neuromuscular going on though. Please do call your neuro and see if they have any ideas or can get you in to see a specialist any sooner.
  16. Hi all, I've been trying to eat gluten free for about three weeks now. I'm not sure if I feel any better or not, so I'm wondering about other peoples experiences. I'm also wondering if any of you were actually tested for gluten sensitivity? I'm debating whether to go to the doc and ask for a test. I hate to think I can never have birthday cake or a piece of pizza again. My family (hubby and teenage son) thinks it's just a 'fad' thing right now and I've been watching too much of the Dr. Oz show-haha!! Thanks
  17. Well, blood sugar will drop about an hour after you eat and then go back up to normal. (That's a lot of carbs to be eating at once, btw ) I just looked up what a 3.6 mmol is equivalent to in US terms and it's a 65, which is considered the low end of normal. If you have the little glucose machine (which I'm assuming you do) take a reading first thing in the morning (fasting) and then one two hours after after you eat, and see what you get. Definitely bring it up to your doctor though
  18. I'm under the impression that blood pools in the lower leg so I don't understand Mayo's rec of bike shorts???
  19. I was kind of wondering about heavy metal poisoning. Also a virus. What other tests did they do for your liver? There's some reason your enzymes are elevated. Are they going to recheck them? Maybe a supplement you've been taking has your liver working overtime???? I don't know, just throwing stuff out there as possibilities. You've got enough to worry about already without me adding more!!!
  20. I only have worn full foot knee highs so far. The ones I wear to work are 20-30 Truform brand. I got them at WalMart, but they are on Amazon also. They can get a little tight at the front of my ankle by the end of the night. I also have the lesser strength ones that are < 20 that I wear on days that I don't work, but I don't think that they do much. They are Medipeds brand.
  21. On seeing an EP--ask your neuro to refer you to one. I was referred to a 'regular' cardiologist when I had my first episode. He did several expensive tests and left me with "everything's fine, you just need to exercise more". A few months later, when I had another episode, I call his office to see him again but he had left the practice. I explained my episode to the receptionist and she said "oh, you need to see Dr. W". He is the EP with that practice. He knew within a few minutes of looking at my previous Holter monitor records that I had dysautonomia. So, really I think seeing an EP is the way to go.
  22. I have one of those finger oximeters also. Its gives me a little peace of mind that my O2 is ok, so I can kind of ignore my shortness of breath
  23. Have you ever been evaluated by an electrophysiologist? I saw 10 different doctors when I first got sick and the EP cardiologist was the only one that had a clue as to what was going on with me.
  24. My blood pressure is on the lowish side also (100s/60s), and after three different beta blockers, I found one that didn't lower it even more. Maybe you could try a beta (or several different ones) if you could get your doc to agree? I had 4 of these 'anxiety attacks' before I went on a beta blocker and have not had one since (knock on wood). I hesitate to call them anxiety attacks because I wasn't doing anything at the time that I felt anxious about. I do think it's an adrenaline flood or something. (FWIW, I tried an SSRI (Lexapro) and it made me feel worse--visible hand shaking, increased urination, increased startle. )
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