Rene S.

Yes, I too have this. Medications that I could easily take prior to dysautonomia, I can no longer tolerate. I get the same effects as you! Racing heart, sleeplessness, restlessness, anxiety and a general feeling of being sick. I used to take zoloft 50mg no problem. I think I need it again but have tried with tiny doses and still feel like i'm going to jump out of my skin. I take klonopin and have for years, but now I find it to be stimulating instead of calming. It's all so frustrating. And I was always able to take Augmentin for an infection but the last time I tried, I got all of these awful mouth sores. I wish someone could explain why we get such side effects. Even benadryl which is supposed to be sedating, now wires me so badly I feel like jumping out of my skin I'm hoping someone can shed some light on this puzzle. Rene

I'm so incredibly sorry for what you are going through. My deepest sympathies. I went through the same situation. It was not pleasant to say the least. Please know that we are all here for you if you need to vent. Divorce is awful and especially when it's not expected. I've been divorced now for over a year and it's not easy. I hope you have a good support system. There's no reason why you would lose your kids. Many people have illnesses and have custody of their children. Good luck. Please feel free to PM if you'd like. Hugs, Rene

Marni, I am so so sorry. I can unfortunately relate and it's awful. My husband (now ex) left 3 years ago out of the blue because at the time I only had fibromyalgia and CFS but he said he couldn't deal with me being "sick" and only wanted the old me. I too thought what happened in sickness and in health? where did that go? If the shoe had been on the other foot, I would have stuck with him through thick and thin. We're all here for you and if you want to PM me please feel free to do so. My heart breaks for you. Just let me know if I can help in any way. Rene

Thanks, sweet Jenn. It s was the 2nd cardio but he never followed through! Just gave me a list of specialists to see via his NP. Hugs back Rene

Thanks, Futurehope. I appreciate your advice! I did take one Slow Fe today and it might be my imagination but I feel even more nauseated! My dr. did tell me she wanted my blood rechecked in 3 months. Rene

Chrissy, sounds like we're in the same boat. Yup, from the mouth to the rear. Thanks for the suggestions. They did say in hospital that small frequent meals vs. large meals but yet when I was there they were giving me large meals with 2 ensures included! No way was that happening! Rene

I just wish I could get an appetite to eat! Drinking ensures are getting old! OJ really affects my reflux. I will look into the almond crunch. And I do eat almond butter straight out of the jar! Thank you! Rene

Hi Nina, Yes, my ANA was "speckled". Glad you didn't test positive for lupus or scleraderma. As for the hormones, having gone through very early meno at 43, I was supplementing with HRT for 5 years and when this dysautonomia struck back in Oct (I had one v-tach incident) they threw me off the hrt and low dose lexapro. Set my body into a tailspin. I tried back in April to get back on the hrt and I felt lousy. I wish they would have left me alone! Nina, how do you increase your appetite with the gastroparesis? I'm supposed to see a Dr. Fisher at Temple next week. Hopefully he will have an answer because I really need to get the weight up! Be well! Rene

Hi. I just had it done last friday. I was apprehensive at first and scared because I heard of some of the side effects, but was ok. No facial flushing, no palps. However, the next day I felt a bit more "wired". Maybe it was also due to lots of blood testing at the same time. Good luck and try not to worry! Rene

Hi. Well, I had my vacation for the summer in a place where no one should have to stay! My cardio called last Thurs (after seeing him on Tues) and said he wanted to admit me to the hospital because he was so concerned over my weight loss. Well, i have never felt more like a human pin cushion/guinea pig. Did the gastric emptying study (eat radioactive egg!) and I have a severe case of gastroparesis. Explains the constant nausea, lack of interest in food and getting full and sick fast and inability to gain weight. I'm to follow up with a known specialist shortly. For now they have told me small meals frequently. Easier said than done. Also, my ANA came back high and are testing me for lupus and sclerderma. My main concern is that my ferritin level keeps dropping. It's now down to 6.7 and my hemoglobin (11.7), RBC (3.94) and Hemocrit (34.5) have also dropped. I'm to start on slow-fe iron supplements (47.5mg). Of course, I worry over reactions. I always thought that post menopausal women shouldn't take iron supplementation? I'm to take one a day and perhaps up it to 2. Is this too high a dose? Is any one on iron supplements that is post menopausal? Any side effects to the meds? Also, since my b/p tends to run on the high side, is there a problem with iron supplements and b/p? I'm also now experiencing severe dizziness and lack of coordination, along with shortness of breath, headache, tachycardia (more so than usual), palpitations and some numbness in finger tips and toes. This has me concerned since it's only been for the past few days. My family dr (who isn't the best) thinks it's from the anemia but I'm scared that it's symptoms of a stroke. I know, I worry too much. Also, I now seem to have developed esophogeal spasms but I feel as if they are coronary spasm (variant). The dr. says wait till I see the new dysautonomic specialist who may be able to shed some light on this. This is so frustrating. It seems to me that more and more symptoms are developing over time. Can anyone relate to the post menopausal anemia and whether or not you are supplementing with iron? How much and which brand? Thank you all for being here for me. Rene

Absolutely! I was just hospitalized for the past 4 days. One day they drew 9 tubes and I wasn't allowed to drink or eat anything for the next 4 hours due to testing. Thought I was going to definitely pass out. Felt incredibly sick. Over the course of 4 day I had approx. 24 tubes of blood drawn! I came home today feeling like a dishrag and my heart has been racing and b/p is everywhere. Sorry you had to go through this too. Rene

I'm so sorry and I can relate, unfortunately. Two weeks ago I was able to drive around locally and run into Rite Aid or Walgreens, pick up a few things. Then last week, everything changed. My b/p skyrocked while driving and my h/r also. i went into major palpitations and now I know I can't drive. I've had this illness since Oct and it's so frustrating. I hate being alone in the house knowing that there is a huge world out there that I used to enjoy. I have given up on exercising and just climbing the steps takes my heart rate to 117. The drs don't have a clue and the adrenal surges are so much to bear. Please PM me if you feel like chatting. Rene

Oh Angela, I'm so sorry for what you've been through. It's awful. I had a very similiar thing happen to me yesterday. Nothing worse that your heart beating out of control. It's so scary. Something you never get used to. Glad your husband was there for support. Doctors are the most frustrating people in the world if you ask me. I'm tired of being told it's just panic/anxiety, etc. I hope you are doing better today. Be well. Rene

Yesterday I went to have blood work done, 7 tubes total. I felt awful afterwards and usually after having blood taken, I'm tachy. I also didn't have much in the way of breakfast and skipped lunch but did have water. When I left I had an appt. with a new therapist. I don't know if I was nervous but I felt my heart rate going a bit fast. When I got to her office, she listen to my heart and took my pulse which was 110 (I'm not on beta blockers). She was easy to talk to, but I felt the whole time that my b/p was up. While driving home after the appt my heart started racing out of control and the palps were non stop. I had run out of water. I thought I was going to pass out at the wheel. I pulled into the ER where unfortunately, I've become a frequent flyer. I opened the doors and screamed my heart is pounding out of my chest. The nurse took a listen and he said you are having a panic attack. I told him that my heart rate and b/p had been high and he took it and wasn't impressed. He said dry mouth is a classic symptom of a panic attack! He handed me a turkey sandwich and said go home. You are on the cardionet monitor and that would pick anything wrong up. I walked to my car and having my b/p monitor took my pressure. It was 171/114 with a h/r of 122. I freaked out headed back inside and told the nurse. He said that home monitors are not accurate. He re-took my b/p and said he wasn't concerned. That I should just go home. I was crying like a baby (pretty sight) but knew that there was nothing that could have been done for me. ERs are a joke. During the day my pressure was high but not like the last reading I got. I'm just scared that some of the readings were high coupled with the tachy. I had 164/88 ad 162/87 prior to the incident in the ER. Has this ever happened to anyone before? Both the high b/p and h/r? I had no chest pains, just palps. The drive home was torture and it was during rush hour. I just kept chugging the water. I got in the house and composed myself and my pressure was 124/72, hr 99 and that was standing. Today, I feel as if I drank 20 Red bulls and that's while on klonopin. The panick feeling is overwhelming. Plus I feel like a dishrag. No strength. Everything aches and I feel as if a truck ran over me or I had ran the marathon. Would the cardionet have picked it up if it were a heart attack? Also since I was driving I couldn't hit the button when I was having the runs of palps I have never felt so drained in my life. And now I'm scared to drive! Could this have been just a fluke? My head is on fire today and I can't seem to settle down. Has anyone ever experienced anything like this? Could I have injured my heart (which of course last week I had an normal echo and ekg!). Sorry I am under a lot of stress and this isn't helping. Thanks! Rene

Thank you all so much for your advice and for sharing your experiences. I've had both colonoscopies and endoscopies before, prior to the dysautonomia. In fact I had 2 of each. And with the colonoscopy I did the fleets Kit #1 and thought it was a breeze. Drinking this Moviprep sounds gross and I'm afraid how it wil affect my b/p. I can't believe with every little thing we have to get clearance. I don't think it's an option for me to be admitted for unless you are dying, they don't admit you. And it would be done in a surgi center anyway. So many factors come into play. All the things we could take for granted before becoming"ill". I know that even now, being back on the carafate, I have to step it down because a full dose makes me dizzy and sick and I never had that reaction before. It's all so frustrating and personally, I think the GI dr should be the one to get clearance from the cardio instead of having me do it. I'll keep you posted and let you know who/what wins. Rene

Hi. Yesterday I posted that I was having horrible GI problems (nausea, inability to eat, reflux, ibs). Well, I spoke with my GI dr last night and he said go on Carafate (yuck!) and schedule an colonoscopy/endoscopy at the same time, but not until I get clearance from my cardio. Now which cardio? My original was fired me in November when he said that you can't have dysautonomia and have high b/p too! Then I was passed onto someone else whom I've only seen a few times. My question - anyone with labile hypertension ever had a colonoscopy/endoscopy and needed clearance from cardio? Also, anyone have any experience with Moviprep? I've had two colonosopies in the past and always used the Fleets Prep Kit 1 with no problem. I don't want to have to drink all of that Moviprep especially since I'm so nauseated all of the time that I'll probably throw it up. And it also contains I believe an artificial sweetner which I can't handle. Thanks for any advice. It's greatly appreciated. Rene

Thanks for the suggestions. I'm leary of anti-nausea drugs since I'm deathly allergic to compazine and probably would be scared to try another one. I did talk to my GI and he suggested the Carafate suspension. Gross. Seems to think that it will calm the reflux which may be adding to all of my other symptoms. He wants me to get an endoscopy and colonoscopy but now I have to get clearance from the cardio (which one, cardio #1 or number 2????) since my b/p goes all over the place. This is so frustrating. The dry heaves are the worst. Thanks, Michelle, but the thought of a banana right now would just eat at my heartburn! I'll forgo the fish oil tonight. Do you find that stress also adds to this? I just want to eat like a normal person. Rene

Hi. Every since this "illness" struck 8 months ago, I've been plagued with the inability to eat. Some days I can eat (appetite is actually better late at night). Food has no appeal to me and I have to force it down my throat. I do have IBS and reflux and lately all of my symptoms are worse. I've also been experiencing dry heaves and burps where it sounds like I'm vomiting (sorry to be so graphic). I know I need to see my GI guy and have an appt. next month. However, with this horrid stomach problem I also get a burning headache that seems to make my shoulders and head burn. Almost as if I have a fever and I don't. My normal body temp is always 96.5. I used to love to eat, now it's lost all appeal. And I know I'm not eating correctly as well. I just ate some pretzels and gatorade. I've been tested for celiacs both via blood and sample during an endoscopy and the tests have been negative. I also get the chills when this happens. I know it sounds like a virus, but it's not. I also have Fibro/cfs and wondering if this is coming into play or is this strictly the dysautonomia. I've tried drinking the ensures and just to get the extra calories in, but the make me sick. I can't get my weight past 88lbs and am beside myself. Has anyone experienced this and if so, have you found something that works? Right now the only med I take is klonopin 1/2 milligram 3 times a day. I supplement with fish oil, baby aspirin, Coq-10, magnesium and a muliti vitamin w/o iron. Thanks for any help. Rene

Thank you, I don't know what I would do without all of you. When I thought the worst was over, my cat starting vomiting all over the place and then my "sweet" daughter" decides to pick a major fight with me. I simply walked away from her and closed my door and cried. She of course opened it, and just kept getting in my face. Jenn, can I borrow that red paint? I seriously would pour it over her head. It's like she knows that I'm upset so she has to add fuel to the fire. I know this day will pass and maybe I'll see things in a new light. It just seems lately that it's one thing after another. I'm tired of dealing with drs, staff, insurance companies and then being told that since my D-dimer is elevated all the time, that it needs to be addressed. Why haven't they thought of this before?????? Someone told me that one of the reasons for an elevated D-dimer could be due to the fibromyalgia. Don't know how true that is. Deep breathing. Funny, I thought that when my daughter came home that it would be a time for comfort and she adds to my stress! Thanks you guys. You truly are so very wonderful. Thank you all for taking the time out to response to my crisis. Lots of hugs, Rene

Hi.Today couldn't have started out any worse. Should have never gotten out of the bed! First thing this morning, I get a call from my ex. He's cancelling my medical insurance since he's getting remarried next month. Ok, doesn't give me much time. Get on the phone with Medicare (I'm on long term SS disability). The process takes forever. Need to get on Part B. Hopefully they will send me forms in time. Second thing - wearing cardionet event monitor for the next 2 weeks, due to the weird chest pains and arrythmias I've been having. This is from my EP cardiologist. I get a phone call from his office (guess he's too chicken himself to call) saying that they want me to be seen by the other cardio in the practice (whom I didn't care for - he's the one that took me off the beta and told me that I needed an EP study and possibly a loop recorder and/or pacemaker, and I needed to go on Florinef even though my pressure is high!) When I told him I wouldn't, he dismissed me. Well, apparently the two of them got to talking and I guess from the toss of the dice, cardio number 2 agrees to take me back, but I don't want him. He was arrogant and thought he was God. So, I have no questions answered as far as my heart is concerned. I don't even know which one is monitoring the event monitor, if that makes sense! Third - I finally get my divorce settlement after a year, and am trying to figure out where in my accts it's supposed to be and the investment guy is talking (hey we're not talking a huge amt. here) and I'm like a character out of Peanuts. I hear the teacher's voice going wa-wa-wa-wa. At this point I'm looking at the window as a good option. Grrrrr. Fourth - last week while at the dr's office they notice how short of breath I am, and I tell him that it hurts my lungs to breathe in and out so he sends me over for some blood work. Sure enough, my D-dimer is elevated - it's always elevated! So, they schedule a v/q scan and the tech had no idea what she was doing but thankfully the scan was clean. Fifth - I get a call this morning (more aggravation) telling me that I should see someone to find out why my D-dimer is always elevated. Sixth - My youngest daughter is turning 21 on Thurs and she told me that she was going to the baseball game with her father. No big deal. Then I talk to my ex and he says he's having a dinner party for her with her friends and I'm not to be included. Can you say bawl your eyes out????? I'm about to lose my mind. No one will get me direct answers. I'm ready to start an A/D but now don't know if I can since they don't know what's going on with my heart. And Cardio #1 won't speak with me, and I don't want to speak with Cardio #2. Plus I'm so short of breath I'm ready to tear my hair out. Sorry that I posted this. Sounds like a lunatic wrote it. I want to go sit outside but am afraid that a plane will fall on my head at this point. Thank you all so much for listening to this madwoman. It's horrible being alone. Hugs, Rene

Erika, You are NOT a failure. Your body is failing but YOU are not. I could have written that post myself. I know 100% how you feel. Too much stimuli. The lights in malls are horrid and they play horrible tricks on your eyes. And I know that awful panicky feeling. You just wanted to get in and get out! And then you became disoriented and that's so horrible. I'm so sorry that happened. Just this morning I thought, well I don't feel so bad, let me get a few errands done. Went to the health food store, picked up stamps at the post office and thought since I'm in the car (doesn't happen much!) let me get over to Walgreen's. Of course I grab what I need as quickly as possible and then there's one cashier, with a problem with a transaction. I too start thinking, I need to sit, how much longer is this going to take? 8 months ago, I wouldn't have given it a thought. Please don't blame yourself. You have no control of this. We're all here to lend you support and understanding. Rene

Hi April, I so can relate to what you are going through and my heart goes out to you. I'm a lot older than you, but still it's so tough being stuck in the house or just going out for drs visits. This is should be a happy time for you and I'm sorry it's not. My girls are grown and have left and so has my husband. All of my so called friends have decided that there's nothing physically wrong with me, that it's all in my head. Sure. I choose to be this way. I had my own business and if you told me 9 months ago this is how I would be, I would have laughed. It's not funny now. I hope you have support from your husband, I know it's not the same as having a girlfriend come by for coffee or going out to lunch. How I long for those days. I wish you well and I'm so sorry that you are in the throws of this awful illness. I hope you do eventually find the job that you worked so hard to get to. Most days for me are spent doing research on the net, trying to take a 5 min walk maybe twice a day - pathetic I know and filling my time with reading and reminiscing. Take care and know that we are all here for you. Rene

Brilliant, Jenn. If you don't mind, I'm printing that one out. Bravo! All of these doctors have egos the size of Mt. Olympus and want to be in total control. No one knows our bodies better than ourselves. Good luck, Cat Lady. I hope he's willing to have an open mind and realize that you know what works and doesn't work for you. Rene

Hi I know this is late, but I was going through the older posts and this caught my eye. My Ferritin level is 8 but my hemoglobin is within normal range. I'm not sure of the connection The POTS dr. ordered the test and when the results came back he said to followup with my GP. She wasn't concerned and said that I should just take the Feosol a few times a week. I'm totally baffled. Why would the Ferritin be so low the hemoglobin normal? I did have a few times where my hemoglobin dropped. Very frustrating. Anyone have any answers? Thanks!

Hey Jenn, So glad it wasn't DI. Glad you are back. Sorry that you had to go through all of that. Know that I'm wishing well and you are in my thoughts and prayers. Hugs Rene