• Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About dizzyape

  • Rank
  1. Help!

    I was diagnosed with orthostatic intolerance, inappropriate sinus tach and Ehlers Danlos 3. I have been getting dizzy so much lately! I also take a low dose beta blocker three times a day. The dizziness sometimes feels like I'm unbalanced sort of like equilibrium is off and other times I'm just super light-headed. It's hard not to freak out when it happens. I am not seeing a neurologist for another month. I take my bp when I feel like this and it's usually in normal range. I wish I had answers as to what is causing this or how to get rid of it....so frustrating!!
  2. What do you consider a flare up?

    Thank you Vepa. I love how you said, "the more experienced they become with their own condition, the less frequently they deem scary symptoms to be serious. " There are so many crazy symptoms that go along with this. I will get a sudden onset of a scary symptom and tell my husband and while he tries to be sympathetic half the time I think he thinks it's in my head. He is an ER nurse and even to him the plethora of symptoms I get is insane. I wish there was a support group I could go to where people will understand when saying you feel like you are walking on a slant, or you get a buzzing in your head followed my a rush over your body, etc. etc.....Nice to know I'm not alone.
  3. Icy cold feeling in head,

    I was getting a similar symptom when I was on metoprolol.
  4. I have read many times the term "flare up." I am trying to understand what symptoms this refers to. I am newly diagnosed but looking back I have had weird symptoms for years and years. Only the last 2 years have I started getting gastroparsis, dizzy spells and increased tachycardia. I had a hysterectomy in May due to heavy bleeding. Nothing was wrong with my uterus as it turns out, it was probably related to my dysautonomia. After my hysterectomy my tachycardia and dizzy spells got substantially worse. I also have many new weird symptoms which just make me not feel good a large portion of the time ( feeling like I am walking on a slant, rushes all over my body that make my head feel weird) I'm not sure if this is what you would consider a "flare up," but I certainly hope so because that would mean it would lessen at some point. Please let me know if any symptoms I've described affect you as well. My doctor at Vandy diagnosed me with some orthostatic intolerance as well as Ehlers Danlos 3. I am waiting to see a neurologist for further testing. My doc says he doesn't like the term dysautonomia because it's too broad. When I go to pages about just Ehlers I don't relate as much with the symptoms because I don't have joint pain or any dislocation. I'm really hoping that the neurologist doesn't find anything life threatening. This whole process is scary and I never know if I should just ignore these scary symptoms that seem to always come on or run to the ER when I get them. Thanks!
  5. I just don't feel so good.

    I also have orthostatic intolerance as well as Ehlers danlos 3. My top symptoms are tachycardia, dizziness, vertigo, gastroparesis, and fatigue but of course there are a host of other symptoms as well. Lately I've been getting these weird feelings of what I call a "rush" I feel lightheaded and just weird. I immediately check my hr and bp and both are normal. Not sure whats going on there. Hoping an MRI in the next few weeks will give me more answers. It's so hard dealing with so many symptoms. I hate not knowing how I am going to feel hour by hour.
  6. I went to the Vanderbilt Autonomic Clinic and was diagnosed with Ehlers-Danlos 3 and was told I definitely have some orthostatic tachycardia along with inappropriate tachycardia. I am waiting to go to a neurologist for further testing regarding my dizziness. The doctor at Vandy (Dr. Muldowney) prescribed Methyldopa for my tachycardia. Upon reading about the med it seems the side effect can be tachycardia but I can't find any information on it being helpful for it. Has anyone taken this for tach before? Thank!
  7. I saw Dr. Muldowney at the Vandy Autonomic Clinic and he was amazing!!!! He sat with me for over an hour and talked about every symptom. I was given the Beighton (sp?) test and definitely had hypermobility. I thought my being able to bend my pinky back so far was normal and that my loose elbow skin and flexability were just traits I had. I would have never thought they were indicators of an illness! I guess that along with my TTT results and other symptoms made him certain I have EDS 3. He also mentioned that I definitely had some orthostatic tach but not necessarily POTS. My next step is Neuro, I will definitely mention the dizziness when I move my neck. I'm hoping an MRI will give me more answers. I hope you get this figured out with your original neuro! Keep me posted. This all so new to me, I was just doing research today and found research that links POTS, EDS and Mast Cell....I'm sure i have have a lot more tests in my future.
  8. Thank you KiminOrlando! I have been super tachy since my appointment. I am getting up to the 120's. From your experience is this normal? Is this what everyone meant about feeling crappy after the TTT? I'm not sure about the craniocervical instability they didn't check that. I just did the breathing exercises, TTT, blood work and got the event monitor. I will be following up with a neurologist. Is that who do the cranio instability test?
  9. Well I did my TTT. It was awful and I had them stop two minutes before it was finished. I had tachycardia up to 140 and my bp got up to 145 (not sure what the dystolic was.) I am wearing a 30 day heart monitor, had blood work done to check my epinephrine and norephinephrine levels. I will be seeing a neurologist soon. I was given a diagnosis of Ehlers Danlos 3. My doctor said that I definitely have some orthostatic tachycardia as well. It's nice to have some answers but I think I still have a road ahead to get everything diagnosed.
  10. I have my TTT and other autonomic testing tomorrow at Vanderbilt. I'm super worried as I've never passed out before. I'm also worried about the fluctuations in bp and heart rate. I am working an event on Sunday and will be on my feet for 10 hours. Does the TTT wipe you out for a few days? Just wondering what to expect. Thank you!
  11. Quick question: I find myself getting these awful dizzy spells and when I take my blood pressure it's normal. Do any of you get dizziness and have a normal bp? I thought the dizziness comes from a drop in bp. Thanks!
  12. Yes and it came back negative although my dr did want me to follow up with a Rheumatologist to rule out anything. I'm calling on Monday to pursue that .
  13. Today I have had a visual migraine, headache, dizziness and extreme fatigue. Now starting to have some of my gastroparesis symptoms. So needless to say, it's been a rough day. I have had so many symptoms off and on for years and after being told "it's just anxiety" I finally got a little clarity. A new doctor finally put a name to all of these crazy symptoms and said he's almost certain this is what I have. My concern is what if it's not a benign form of Dysautonomia where I can just deal with symptoms as they come, what if it's something worse? Does anyone have this many symptoms? - fatigue, gastroparesis, headaches, dizziness, vertigo, chills, ringing in my ears, tachycardia, feeling like I'm in a dreamlike state, feel like I'm walking on a slant..... I keep reading POTS symptoms and there don't seem to be this many. I'm hoping it is not a worse form of Dys or something else. Just looking for your experiences. Thank you!
  14. Relief from dizziness and vertigo?

    Is it life threatening or just really annoying?
  15. Relief from dizziness and vertigo?

    Interesting I did a little research and seem to have almost all of those symptoms. I will request an MRI. Is there anything that relieves your symptoms I sure don't want to have surgrey if I do have it.