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  1. I've been diagnosed with a hereditary disorder of connective tissue, similar to EDS. I've also had very minor issues with dysautonomia in the past but nothing major. My heart rate was often times very fast but it was never an issue. My genetic disorder affects my cervical spine since I don't have proper support in holding it together. I'm also structurally unbalanced & it's a combination of documented structural weaknesses with weak collagen playing a significant role. The perfect storm. I also have dental manifestations ie retrognathic jaw & collapsing dental arches. So, when I have dental work the slight change in dental occlusion sets off an episode of rapid heart rate & poor sleep. This is cumulative & doesn't resolve. Has anyone else had an experience like this? I feel like I'm the only person in the world in this situation........and I may be
  2. I discovered something unusual today. Over the years I've had minor bouts of fatigue that would come on suddenly or would feel like the flu. Well, I actually slept better than usual last night & felt more rested upon awakening. I made breakfast, still feeling relatively good, sat down to make some phone calls thinking I would get a lot accomplished today. FIrst call was to my insurance company & after navigating the "robot prompts" I reached a live person. The call got a bit complicated with technical details & the rep & I had a difficult time understanding each other. Within 10 minutes I crashed. I went from feeling pretty good to feeling like I was coming down with the worst flu ever. I don't think I've ever experienced such a sudden crash probably just due to frustration. In the past I would have these flu like symptoms but they would never develop into the flu. I believed they were immune related. Now I realize these were probably just autonomic crashes. Does anyone have any thoughts or insight? It was vey weird.
  3. Is 2-3 nights enough time to see if a beta blocker is working? If it results in impaired sleep in this short time frame can one assume that it's just not the correct med? Sleep is significantly worse with the BB.
  4. Artluvr09, Sorry to hear about your nightmares. I also have vivid dreams & I believe it's because I rarely get into REM. Thanks for your input.
  5. Thank you for your answers. I dont know the level of spikes but they were very frequent per my sleep study. A Holter monitor registered very little. I begin the beta 1/2 recommended dose & I take it at night as directed. Yogini, you bring up a good point. Beta blockers may just be wrong for me. I've recently noticed that sleep is almost impossible if I'm out & about during the day so daytime activity definitely has an influence. If I spend a few days at home my sleep is much better. Does this resonate with anyone? Perhaps, it could be the overstimulation of being out. ??? Trying to figure all this out. I also have spinal instability & am thinking this could be the driving force. I'm meeting with the appropriate doc to help sort this out. My sleep has abruptly gotten so much worse for no apparent reason. I can see now that it can be a bit complicated & everyone has a very different set of parameters. Thanks, gjensen, teacherlauren. story
  6. TammyKay, Thank you for your response. It made more sense reading your post. (often times I need a visual) I've had issues my entire life also but was totally unaware. I slept well, though, until my neck injury. Or, so I thought. Now the surges. The combined stresses really do add up whether they be physical, emotional or a combination thereof. I've had too many times when I didn't have a choice but to push myself. I guess now it's time to slow down a bit, relax & get well. :-) story
  7. TammyKay, Was thinking. How long has it been since you've been unable to sleep? Is this just the beginning of your treatment plan? My issues have been going on for several years but I remained undiagnosed so nothing was really being done. I had my first sleep study done several years ago but it was read as normal when it wasn't. The 2nd study is recent so I've just begun the beta blockers. I was wondering where you were in your journey. Mine has obviously taken me the long way around town. story
  8. TammyKay, Thank you for the input. I've heard wonderful things about Dr. Grubb & it's good to know you have a great team of docs who are following you. I've never had a TTT but I have a diagnosis from a sleep study. I don't know how much a TTT would contribute in my situation. I've been formally diagnosed with a collagen disorder but not EDS and my family has many of the same traits. So I would consider my primary problem to be instability due to ligament laxity affecting the cervical spine. For me I believe PT is critical to my recovery since it would help stabilize. I've recently been able to locate some good docs but most are out of town. Glad you handled the trip so well. I experience autonomic symptoms when I fly & just the thought of getting up Sooooo early is overwhelming, as I'm sure you know. I remember once when I took a Halcion for a night MRi I couldn't believe how well I slept. Of course I don't think it's something you would want to take every night since it's a hypnotic. But, I actually felt like a human being! I certainly hope you find what works for you. I've heard that sleep is one of the easier POTS problems to deal with but I don't know how true that is. These are all fairly new developments for me so I'm still learning & everyone is so different in their responses. Appreciate your input. Wish you success with Bystolic. :-) story
  9. Thank you all for the excellent suggestions. I'll look into the beta-1 selective meds. Also, thank you for the link. I neglected to mention that my sleep issues were caused by a neck injury so some of my issues may be due to instability. However, I've had elements of dysautonomia throughout my life (as others in my family) My recent sleep study yielded excellent info but the doc unfortunately made no recommendations / referrals. The heart spikes were the majority of awakenings with some episodes of apnea & limb jerking. I also cut my pills in half just in case I don't react well. Tammy Kay ? Were you required to take a tilt table test or similar tests prior to seeing Dr. Grubb? I also have the aldosterone/renin/collagen connection and my functioning during the day is severely impaired due to sleep deprivation. If I could ONLY get some regenerative sleep it would resolve so many issues.
  10. Hi. I was found to have numerous spikes in my heart rate during the night (200 plus per sleep study) which has led to significant insomnia & debilitating fatigue. I've recently tried beta blockers ie metoprolol, propranolol both of which made the insomnia much worse. I literally wasn't able to seep AT ALL. The doses were very small since I tend to react often times in a not so positive way. Has anyone had this experience? Would there be a different class of drug that would be more helpful? Appreciate your responses. story
  11. Jerry, I think you're correct, you probably had an underlying that was exacerbated by your surgeries. I remember reading about a man who developed dysautonomia following gastric bypass surgery. So, definitely plausible. I would think any stress on the body could cause it in the right individual. story
  12. You may want to consider Somatic Therapy, Somatic Experiencing as put forth by Peter Levine, MD. It's been successfully used by many Vietnam Vets for PTSD and by people who "hold" muscular tension patterns. These will impact the body globally. The Philosophy is to never discuss the triggering factors since this in itself is traumatizing. You may want to Google it & explore. story
  13. Thank you everyone for your encouragement. Janet, your info was very helpful, thank you. Dr. Cannom is at Cedars on Friday mornings, Good Samaritan on Friday afternoons & downtown during the week. I just called to be sure since I wouldn't want to end up in the wrong place. Glad to hear you had a favorable impression of him. I'm looking forward to meeting with him & getting to the bottom of my problems.
  14. I have similar issues & your post was very helpful. Thank you!
  15. Does anyone have experience with Dr David Cannom at Cedars? I understand he's involved in a Dysautonomia support group but I would be interested in learning more about him. Does he require further testing such as tilt table & is he comfortable prescribing beta blockers for tachycardia? I realize every doctor has his/her individual approach & I'm looking for a good fit. Appreciate it.
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