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Pcola

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  1. @StayAtHomeMom I know I am really fortunate in that regard. I have talked to so many people that have had trouble getting diagnosed muchness get proper treatment for it. Some doctors still don't accept Dysautonomia as a real medical diagnosis.
  2. @bombsh3ll Your message brought back a memory. I too used to only have this right before waking. That is when my specialist told me I was having an adrenaline dump. I have always slept on a couple of pillows and recently increased it to 3 because I tend to "burrow" in my sleep defeating the purpose of the pillows and leaving me laying flat. I am only sitting straight up after a tacky episode because that position (along with lots of water) helps relieve the symptoms of the episodes. I don't know why my lips and eyes swell slightly during these episodes. I have taken Clonazepam for over 10 years. It was prescribed to help me get my REM sleep as I was practically insomniac prior to being prescribed and could never catch up on my rest. I was never told that it was for my Dysautonomia symptoms although I suppose it may have some effect. One doctor asked "why in the world are you taking Clonazepam if you have Dysautonomia? It only lowers your blood pressure and heart rate more than it already is." My problem with waking tacky several times a night started about 3 years ago, and I just started trying to wean off the Clonazepam (looking to do anything to see if it makes a difference) a few weeks ago. I have noticed no change one way or the other. The only difference is that the lower the dose of Clonazepam the more vivid and memorable are the nightmares that come with the tachycardia episodes. Has to due with the amnesiac effect. Good luck with your trip out of town.
  3. @Pistol Your point is well taken. My PCP's PA has been a life saver. She has helped me with so many different issues in the past. I think my apprehension about the new doctor is really more about my past appointments with new doctors where I wasn't believed, told my home bp cuff must be broken, was told there is no such thing as Dysautonomia or was written off as a hypochondriac. I just hate paying co-pays for those types of visits. I am keeping a positive attitude for my visit tomorrow. hyperPOTS is a new word to me. I need to research that. Another reason I am seeking out a cardiologist is because I have mitral and tricuspid regurgitation and PVC's. It would be nice to have someone rule that out as part of the problems I am having. Fortunately, I have not had a UTI in a very long time. I am taking the Bactrim for a sinus infection. Thank you for the information and good wishes!
  4. @StayAtHomeMom I guess I got lucky with my diagnosis back in 2002. On a routine visit to my rheumatologist, the nurse noticed my extremely low blood pressure. She asked "are you alive?" Stunned I asked what she meant. She told me as low as my blood pressure she was surprised I was alive. I was dealing with so many new diagnoses at the time I guess I just thought the symptoms were because of one of the other health challenges I have. She passed the information on to my rheumatologist who was familiar with Dysautonomia. He explained Dysautonomia to me, and gave me a referral to a local specialist. I know many people deal with the symptoms for years without a diagnosis. Sad. I will talk to the doctor tomorrow about midodrine and metoprolol. Thank you again!
  5. @peachychou123 It is a frightening thing to wake up and realize you are tacky not to mention very uncomfortable. This has been going on about three years for me. It went away for a few months (no reason I can find) and then returned. I am currently on Bactrim and have taken it several times over the years. I had the nightly problem of being tacky before I took Bactrim. However, last week just to double check, I quit taking the Bactrim with no change in my symptoms. I know that when I was seeing my Dysautonomia specialist (now medically retired), he suggested that I was having an adrenalin dump in the early hours of the morning. However, I am having 3-4 episodes a night. I end up having to try to sleep sitting straight up in bed as laying down makes it worse. I also drink 1/2 to 1 bottle of water (thinking I needed to increase my blood volume) with each episode and after about 15 minutes things go back down to a more normal rate.....until the next episode which is almost to the minute 2 hours later. I have tried everything I can think of to see if something I am eating, drinking, medications etc. is a trigger. I have found nothing. I have been told by several non-specialist doctors that they must be panic attacks, but I just don't see that. Thank you for your response, and I hope your symptoms get better soon.
  6. @RecipeForDisaster It is good to hear that I am not the only one having the pounding heart at night time. It seems so backwards from everything I have heard about POTS. I've always been told if you pass out its all good once you hit the floor because you're laying down. So then why at night when we're laying down do we become symptomatic? I am glad you found something to help the misery. You're right it is easier to handle during the day when you aren't trying to get a little sleep. I will see what my cardiologist offers tomorrow and will bring up metoprolol if he doesn't. Both of my daughters have Dysautonomia, and they do well with Adderall. Not something my system would tolerate. Thank you for your response and information.
  7. @yogini Before my Dysautonomia specialist retired due to his Dysautonomia, he tried me on several SSRI's. He prescribed SSRI's, Adderall and Midodrine to other patients, but I could not tolerate any of them. I am definitely open to taking a bp raising medication along with a beta blocker. I am hoping that my appointment with my new cardiologist will bring positive results tomorrow. Thank you for your response and information.
  8. @StayAtHomeMom Does midodrine cause you to swell? I tried that several years ago, and it seems that I remember it making retain water to the point of being uncomfortable. I am a little concerned about the cardiologist that I am supposed to see tomorrow. I always make it a point to check new doctors out (licensing, credentials, specialties, certifications, claims and length of licensing), and I can't find anything that shows he was ever licensed as a cardiologist. His specialty (according to all of the licensing boards is Internal Medicine.) He is located on the same floor as the cardiology department (thats a good sign), but they got me in with one day's notice which is unheard of with every other cardiologist I have ever tried to get an appointment with. I am hoping for the best. Thank you for your reply and the information. Fingers crossed for my appointment tomorrow.
  9. @Pistol - I just received a call from a local cardiologist office and now have an appointment for Monday. They said my referral was for Dysautonomia and "sick sinus syndrome." This is a new doctor so I am not sure if he believes in Dysautonomia. I am thankful though that at least there is hope that someone will listen and try to help. If given the opportunity I will mention carvelidol. I took a quick look at it, and it may not work for me as I have asthma and it is contraindicated for asthmatics. I am glad that you have found something that works for you. I have taken clonidine in the past, but it does tend to lower my blood pressure quite a bit. Thank you for your response and the information on the medications. Hopefully Monday's visit will be productive.
  10. I was unable to take metoprolol previously, but that was many years ago. If it works for you then perhaps it is time to try that one again. My blood pressure at the low end is about 90/54 and at the high end 139/113 (just during my nightly tachycardia episodes.) I have also noticed that steroids that used to make me feel good now make me feel much worse and antibiotics that worked now make me sicker. It seems my entire system is changing. Thank you for your reply and information!
  11. I am exhausted. I was diagnosed with POTS in 2002. I have been unable to tolerate most of the usual meds, but have been able to take Clonazepam at night for a decent night's rest until about three years ago. Fortunately, I have been able to control my POTS with adapting my postural position to alleviate my symptoms along with drinking a lot of water every day and avoiding getting over heated. About three years ago I began waking up approximately 2 hours after falling asleep with tachycardia of 100-120 bpm. Sometimes my blood pressure would be high with triple digits for systolic and diastolic. Other times it would be very low. I use two different bp machines so I know the readings are accurate. On the nights this occurs I sleep very little. The only thing that helps is to sit straight up in bed and drink a couple of bottles of water. As my bp and hr even out, I will drift off to sleep - still sitting straight up - only to awake two hours later and have to repeat it all over again. This happens approximately 4 times a night. I go to bed now with my bp cuff and 4-6 bottles of water every night. The tachycardia leaves me feeling like I have run a marathon the next day not to mention the effects of the loss of REM sleep. I have been told that Clonazepam will lower your blood pressure so I have reduced my dosage down to 50% of what I was taking with no change in my symptoms. I plan to continue reducing my dosage until I no longer take it. I have mitral valve and tricuspid regurgitation along with PVC's. I have sought help from my medical providers and was prescribed a beta-blocker which as a dysautonomia patient is difficult to take because of the unpredictability of my POTS symptoms. Beta-blockers can make my blood pressure too low. I continue to seek help to resolve my issues with nightly tachycardia and high/low (inconsistent) bp. I have run into a wall because I have the diagnosis of Dysautonomia/POTS and it has become my doctor's "go to" explanation/diagnosis for any bp/hr issues I have. I cannot even get a referral to a cardiologist because I have Dysautonomia and cannot get my doctors to look beyond that. I would love to look forward to going to bed at night the way I used to instead of dreading the approach of bed time as I do now. The other symptoms I have noticed is that when I wake up with tachycardia and bp issues is slightly swollen eyes and lips. I am also having extremely violent nightmares with each occurrence. I thought at first that my nightmares caused the tachycardia, but I have come to realize that the tachycardia is driving my nightmares. The higher the tachycardia the worse my nightmare is. Its almost as if the nightmares are a protection mechanism to cause me to wake up and get the situation under control. My doctors have also suggested that I am having nightly panic attacks, but I feel that is unlikely. Certainly not 4 panic attacks a night anyway. It also seems that the fact that I take Clonazepam each night would lower the chance that I am having panic attacks. As I write this, I can feel my blood pressure rising and the pressure growing in my chest. I just verified it with a quick bp check. Last weekend I decided to sweep the floor which is not an unusual activity for me. I usually don't have a problem with it. However this time within a minute or so I could tell my hr was too high. When I checked my bp it was fine, but my hr was 154. My resting hr is normally 60 as I was a long distance runner for over 30 years. My dilemma is that being intimately familiar with dysautonomia/POTS for many years I always thought we were symptomatic only when we were standing or sitting for periods of time. Sleeping and exercising were supposed to be good things. So much is not making sense, and I am confused. Does anyone else with Dysautonomia have problems when they lay down? Does sleep bring on your symptoms? I apologize or the length of this post, but appreciate any information anyone may have.
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