Rene S.

I don't even know where to begin. Thank you doesn't seem enough to say. Miss Firewatcher, thank you for starting the post. You are truly a wonderful friend. Everyone on here has touched me so. It brings tears to my eyes. I get so much support from all of you. I'm doing this on my own but when I read all of your postings, I feel like you are here with me. Thanks, Potsgirl for trying to call and for your love and concern. It wasn't easy. To recap, I had an angiogram done a month ago for a brain aneursym. They let me lay in the bed for 4 days and the mechanical booties they had on me weren't snug enough (which I found out on the 4th day of laying like a couch potato). I went home and had leg pain where the catheter was inserted but ignored it until it began to trouble me. Went to the ER (grrr!). Had the doppler done and sure enough blood clot on left femoral artery. Started me immediately on heparin then onto coumadin. Had both an endo and colonoscopy since my hemoglobin kept dropping. Ferritin level was very low. Everything looked fine on the testing. Had more tubes of blood taken than I care to remember. Lost count after about 35. The hemotologist is looking for all sorts of genetic reasons. I feel like a human pin cushion. I insisted on being placed on IV fluids the entire time. No one got the dysautonomia except one anesthes. who told me that he thought I was volume depleted and it was good that they were pushing the fluids. Now, home, on Coumadin which to me is the worst drug on the planet. I'm nauseated, dry heaving, dizzy, can barely make it from one room to the next and am freezing cold even though it was warm here. My body has been through more than I think it wants to handle. I will need to be on coumadin for at least 3 months. I tried to call the dr yesterday but of course being a holiday, I got the oncall dr who knows nothing. She said my side effects can't be related to coumadin but researching and reading the insert from the pharmcist indicates that these are real side effects. My sleep has been effected and food is nothing I want near me but yes, I'm force feeding. Sorry I'm rambling. I'm so grateful to all of you. It means so much to have wonderful people rooting and praying for me. Hugs, Rene

Hi. I've only tried benicar (1/2 of a 5mg tablet) once. It produced horrible tachycardia. Sorry it may work for you but it was awful for me. Take care, Rene

Hi. I only tried Cardizem CD twice. (It was the generic version). I believe it was 120mg which was taken once daily. I personally didn't like the way it made me feel. I felt tachy and it made me feel worse. Sorry but everyone is different, it may work for you. Wish I could add more but I only stayed on it for two days due to the symptoms. Norvasc (another CCB) didn't prove to be any better. Good luck, Rene

I feel your pain and get exactly where you are coming from. I've been to various cardios, endos and one neuro who knew nothing about autonomic dysfunction. I was always have elevated b/p but none of them thought it was a big deal. A few times especially at night, my b/p would plummet to 70/40 and they never batted an eye when I told them. I too wish that my b/p would either plummet or go skyhigh and my b/p race or even a palpitation while having an ekg. It's so frustrating. And I too have been to drs that were on this site. I too feel like maybe if I looked worse (and I think I look pretty awful), or presented myself as being incoherent maybe I would be taken seriously???? It's so frustrating but you are not alone. Many have found amazing drs but I don't consider myself one of them and sounds like you are in the same boat. I'm so sorry. I'm not going to all these drs just because I have nothing better to do with my time or money. Grrrrr. Good luck and I hope you find what I'm missing! Hugs, Rene

This is bizaare. Maybe someone can help me shed some light. I have hyperadrenergic pots. Or I did. My b/p was always too high. 161/85, then maybe 140/80, the highest was 171/114. Infact, I wound up last April in the hospital with elevated troponins due to my pressure being elevated all night. I had an intercranial angiogram 2 weeks ago. Ever since then, my heart rate took off. It's calmed down a bit but now I'm having majorly low b/p readings, especially my diastolic. One night it went to 70/40 but I drank gatorade and got it up. It used to be if I walked up the steps my b/p would go 170 over something, but then come down. Not now. And my diastolic is falling. Some sample readings: 111/60, 90/54, 107/61, 120/56. I know these are normal for most, but abnormal for me. When it does go a bit higher, it will be 130/60 which is a wide pressure pulse. And that's another thing, my diastolic wil not come up to 70 no matter what I'm doing. Truth be told, I thought perhaps I had a bleed somewhere. I saw my family dr who said something about the parasympathetic and I seemed to have lost him. He did blood work and I'm only slightly anemic Hbg was 10 and my ferritin level was 25. He doesn't think I'm bleeding anywhere, yet as soon as I stand up I'm so dizzy that I'm forced to sit back down. At night, my b/p is going 90/53 and my heart feels like it's racing when I'm laying down and it's usually 86 which is slightly high for a resting pulse. I was told if this continues and I still feel lousy, to come back in next week. The neurosurgeon has yet to return my phone calls and I've been calling for over a week. Can having a procedure and or general anesthesia change my autonomic nervous system? I'm frustrated. I should be happy that I no longer have high b/p, but this is totally out of the norm for me and it's been high since I was diagnosed 1.5 years ago. I feel every beat of my heart, especially when laying down. And I'm getting a lot more palpitations wich had disappated somewhat. Infact, when I wore the event monitor for 3 weeks I had only a few palps now it's daily. Just curious as to whether any one else has experienced a major shift like this. I don't want to spend an weekend in an ER where they will look at me like I'm nuts because my pressure is normal to low. It's just frustrating. The only positive side is that I have an appetite for the first time in 1.5 years. Something is definitely not right. Thanks for any imput. I would love to figure this out. Rene

You are so kind. It's the waiting that's driving me nuts. And the feelings of helplessness. I'm still waiting for blood results because my b/p is just crashing and it's always been high. Gettting a bit scared. Trying to get outside and not sit in the darn bed. I'm so sorry that it took you a few months. It's now been two weeks and sometimes I think I'm worse now than when I first came home. The drs office is frustrating. I just wished they would call me back with test results. The waiting game!! I just hoped nothing was nicked during the procedure and that I have a bleed somewhere. My mind still is racing and not sleeping well at night. Gee, it almost sounds like PTSD Thanks for your words of encouragement. Hugs back! Rene

Thanks, Shim. I hope everything is ok. Was this for your wisdom teeth? Catch you on facebook. Feel better. Thanks for the response. Rene

Hi Lauren, I know you said you've tried magnesium, but which type? I have gastroparesis along with IBS and it having the same problem as you. I find that the magnesium citrate by Solgar works great with no bloating or gas. I take 400mgs (they are 200mg tablets and you might want to start on 200mg just to see how it goes). I too found fiber to be causing bloating. I also find a small glass of prune juice helpful. Good luck and hope you feel better. Rene

I'm so frustrated. Just when I thought I couldn't feel worse. Hah! Today is two weeks since I had the intercranial angiogram with general anesthesia. It's been rough, loss of sleep, fatigue, and feeling like that truck keeps hitting me. Also, my b/p has been tanking, especially my diastolic but my heart feels like it's racing and forceful even just walking around or moving from one position to another. I saw my primary dr. yesterday who knows about autonomic dysfunction (he's a DO and also does cranial manipulation). I let him know wha was going on and how lousy I've been feeling. He said that it was just too much for my body and it will take time to recover. When I was in the hospital they told me that I was slightly anemic but never gave me follow up for it. So, my primary wanted to do blood work. I was leary since I had 25 tubess taken 2 weeks ago and I don't have it to spare. He wanted to check my ferritin level was has been very low at times, hemoglobin, electrolytes, potassium, magnesium, vit. D and some other test. He said it would be 2 tubes but turned into 6!!!! I felt it immediately. Luckily they drew my blood laying down. I came home, drank gatorade and then the fun began. The room started spinning and I felt like I was going to pass out. Drank gatorade and ate salted nuts. Two hours later, still didn't feel well, called the dr and he advised laying down with feet up and salting. It was a long night without sleep. So, I'm awaiting the blood tests and feeling so weak that showering was a major chore this morning. Is this ever going to get better?? I'm tired of lying around doing nothing. And I'm so shakey and short of breath??? Thanks for letting me vent. Rene

Hi Nikki, Sorry you are going through this. I have this happen alot. Sometimes it wakes me. I know that my cortisol levels run high at night but not sure it that's what causes this? When in doubt, check with your dr. but I think many of us experience this. Such a horrible feeling. I've had it during the day as well, just sitting and my heart rate takes off. Are you on meds like a beta blocker? good luck. Oh, I'm pos meno but I do know many of us have a worse time during our periods. Rene

Ericka, I can relate to not being able to eat. I'm so sick to my stomach. Haven't felt this bad since I was diagnosed with gastroparesis. A good friend came over last night and she meant well, cooked dinner so I was forced to eat it. It was turkey burgers with mashed potatoes but I felt so sick afterwards. She made the burgers in oil with lots of onion and garlic and I'm still feeling the effects today. I know I have to eat, but this morning so far I've barely managed an Ensure, banana and a few bites of a muffin. Hope this feeling doesn't last another two weeks. Sorry that you had to go through this too. I still can't figure out how a one day procedure can mess up my body so. My throat is still sore and raspy from when I was intubated. Enough is enough. Be well. Rene

Sorry for what you are going through. I've only taken xanax once in my life, and had a paradoxal reaction - it brought on more anxiety than I was experiencing. Some of the other benzos have done that as well. I can totally relate to what you are going through. Once something causes panic, you just naturally associate the situation with always being panicky. I hope you can find the right meds to help you through your flight. Perhaps a small dose of vallium? Definitely check with your dr and let him/her know what's going on. Good luck. Rene

I'm totally in a quandry. my b/p has been super low for me up until an hour ago. All of a suddden, just sitting on the computer my heart takes off, and I can't breathe. Take b/p 155/75 hr 120!!!!! Adrenaline surge???? Scared me for sure. It lasted about 2 mins but I'm shaking like a leaf now. This is getting more and more frustrating. I wish I would have known that general anesthesia is a no no for us! I'm furious. Rene

So sorry Ericka, I feel just awful. I'm now salting (which is something I never did before!!) due to my b/p dropping. Usually it's high. I'm kind of scared and will give it till tomorrow before I really start to panic. I have zero appetite but am pushing fluids and ensures. This is so scary. I never would have gone through with this had I known I was being put under general anesthesia. I just want to get back to my pre-surgery self - and I thought that was bad!!!! Thanks for letting me know that this will get better, I hope! Rene

Thanks sweet Jana. Hope you are doing better. Yes, I'm trying not to talk and eating soft foods is all I can manage. Just cleaned toilets (what fun!) and felt like I ran a marathon. Tired of sitting in bed all day. Making sure that I'm not laying, but rather than sitting. I swear someone hit me with a ton of bricks. I don't know why recovery is so long. Love you, feel better. Rene

Chaos, you are describing my symptoms to a t!!! heart racing, the laryngitis (one week today since I was intubated) tremors that won't stop. I feel as if my adrenaline is on overdrive. I can barely stand up and the shortness of breath just going up steps is exactly as you describe. I just wonder when it's going to end???? I tried to get the trash out the other day and was able to drag two bags out and called it quits. Also, I've noticed that I'm exhausted but can't sleep???? I'm sorry that you had to go through this as well. But I so appreciate you sharing what you went through. I guess we don't recover like "normal" people. Rene

Thanks, Jessica, I wonder if I'll ever feel right again or what I felt prior to the procedure. I just can't get a grip on feeling so lousy. I don't want to decondition even more but I can't seem to get my tush out of the bed. Trying to eat lots of fruits, juices and ensures since my throat is still so sore. Take care and thanks for the encouraging words. Rene

Thank you both. Michelle, I know we've discussed before about the steroid prep. Grrr. It was weird, I did 40mg of solmedrol 12 hrs before the procedure then again in 12 hours. Normally I've done it wher 120mg is used. They wanted me to continue that night after the procedure but I refused it. I never had it like that before. And they wanted to continue the benadryl which I also said no to. Still almost 6 days out and I still feel awful. I have no strength, no appetite and am unable to sleep. I think this has seriously caused a major problem with an already messed up ANS. Had I known I was to be put under, I would have said no thanks! fc3, I don't think I was overhydrated if anything, under. I couldn't even swallow ice chips for three days and even now it hurts to swallow after being intubated. I'm trying to stay hydrated. I spoke with my cardio last night and she thinks that it just is taking longer for my body to get rid of this junk. She told me from not eating for 3 days, lack of sleep and lack of water can cause this. I'm pushing fluids but still feel awful. I hope this isn't a permanent condition. My urine is clear now that I am home and drinking. I have to say that I probably don't get enough fluids because I don't feel thirsty but I learned that I have to force myself. They did test my potassium levels in the hospital and they were a bit low so they were giving me iv fluids with potassium in it. Just wonder when I won't feel the need to be bedbound anymore. i walked to my mailbox down the road yesterday and I was huffing and puffing like an old person. Sheesh. No morphine. I'm allergic to most narcotics. Thanks for your responses! Rene

Hi Ericka, You are not alone. Before being sick, I used to shower at least once a day and maybe a bubble bath at night. Now, especially since my procedure last week, I'm lucky if it's every other day. I have baby fine hair and it should probably be washed, but I find myself not caring so much because I know that the showering alone will send me back to bed in no time. Funny, I was the one who always had to have a full face of makeup. Now, forget it. Just takes too much out of me. Besides, I've read that it's actually better not to shower everyday. It helps your skin maintain it's natural moisture when you're not stripping it away by showering. So it seems like we'll all just be scuzballs together! LOL. Hope you are feeling better! Rene

Nina, which hospital did you wind up at? Penn? I hope you are doing better and healing. Be well. Rene

Thanks everyone for your responses and support. I'm still dealing with a horrible rapid heart beat. At rest, it's between 90 and 95. I feel it pulsating in my head. I'm getting concerned, but when I called the surgeon on Friday they said go to the ER. Right. Like what will they do for me there? And Nina I did go to Jeff and explained about the autonomic dysfunction. I don't think they knew what I was talking about. Walking around is worse h/r is about 120-140. I'm just miserable. Besides the soreness of where they inserted the catheter I'm dizzy and weak and trying my best to stay hydrated. I'm furious at them for knocking me completely out and not giving me nourishment for 3 days. Sorry bags of saline don't cut it. Does anyone know what is causing my heart to race at rest? Is it just from exhaustion? The procedure? Just getting extremely frustrated. Thanks, Rene

What a week of pure ****. I was diagnosed about a month ago with an aneurysm on my right optical artery. I was told to follow up with either a CT Scan, Angiogram or another MRA with contrast. The neurosurgeon wasn't too concerned but did say that even if it were small it could rupture. Long story short - I was at the cardio on Monday and had the most wicked headache. I told her that it was progessing since 3 days prior. She told me to head right to Thomas Jefferson Hospital since they are known for their amazing Neurology dept. Get there, Monday evening around 7 -ER room so crowded but they bring me in right away. Rushed to CAT scan, no visable bleed. Next they want to do a lumbar puncture but I thought it was a bit much since they were admitting me to do a inter cranial angiogram the next day. Of course, I had lots of questions. I was scared especially since I needed to be prepped being allergic to the contrast dye. Met with one of the anesthesioligst, who assured me that I would be in twilight sleep and that I wouldn't need general anesthesia. Well, I get prepped taken into th OR and have a nasty anesthesiologist who explains nothing. Next thing I know, I'm back in my room, a foley cath inserted - ouch! and my throat is beyond sore. They wound up putting me under and intubating me. They thought they would have to do an intervention procedure but the aneursym was smaller than they thought and in a difficult place to get to. So, we're to watch it. Now comes the fun part. Apparently my b/p went a bit high and the nurse gave me an injection of hydrolozine (sp?) My heart rate takes off. She then after about 20 mins gives me a dose of lopressor and heart rate comes down and bp plummets. After 3.5 hrs of sitting due to the fact that they inserted a catheter in my groin, I was allowed to get up. Felt lousy, could not swallow. Heart rate that night remained at 125-130. Grrr. I hadn't eaten for two days nor slept. My throat remained inflamed and swollen and no food allowed. 25 tubes of blood must have been taken during my time there. Still no sleep. Ready to leave on Thurs. Heart rate still high 116. The cardio says I can live with it, but because I'm so thin I feel it more than anyone else would. Baloney! Now as I sit here, I'm still not doing well. Heart rate at rest, 90-100. Walking up to 140. Vision is blurred which I noticed after the procedure. They assured me that my eyes were fine. That perhaps it was due to dry eyes. I said this would be short, sorry it's longer than I intended. Has anyone else had any weird experiences from going under general anesthesia with our condition? Or a very rapid pulse? I've literally been in bed since Thurs since standing brings my h/r to 140 and showering today was a major chore. I did take a small dose of metoprolol which brings my h/r to 88 but not for long. I feel like I was run over by a truck. I'm trying to stay hydrated and eat, but it's hard when you can't swallow. I can't even walk down the road to the mailbox. I believe my body was majorly traumatized and that I should not have been knocked out. I was too thin and too weak to begin with. I pray that this is just a passing thing but I feel more like an invalid than ever. Thanks for any words of wisdom. Rene

Teri, please tell Nina that I'm thinking of her and wishing her a speedy recovery. Rene

Erika, sending you warm wishes and hugs and prayers your way. Wishing you all the best. With love, Rene

Hi Erika, I'm so sorry this has happened to you. I can relate to the shaking. I always think perhaps too much adrenaline? Are you feeling any better now that you are home? I'm in a bad state myself. I feel like my arms and legs weigh so much and I can barely walk.. Sending hugs your way. Rene