Rene S.

Since being on a beta blocker, my resting h/r is low 50's to sometimes 40's. A few times on cardionet, I was captured at 27. And to think that two years ago my resting was above 100. Been lowering the beta (acebutolol) to every other day at the smallest dose, but heart rate stays the same. It did come back up when I went three days without out and worked out.Got to 103. But the beta blocker does help with the surges.

I'm so glad I've found this topic, thanks to Potsgirl. Before beta blockers, hy hr was always above 100 and normally 120-140 and higher. Right now I'm on Acebutolol 100mg (the smallest dose and it only comes in capsule form). Since being on betas, I'm now mostly bradycardic. My lowest also 27, recorded on cardionet monitor. Occassionally, my heart rate will go to 63 and it feels high! A few weeks ago, when it was very hot and humid it was in the low 40's. Not fun. Normally I run around 52-55. I'm now taking the beta blocker every other day, but still does not seem to bring my hr back up. I've seen a few very EP drs and love the one I'm using now. He explained that I don't remain at 27 and that structurally everything looks ok with my heart. I also have pauses, the longest being 3.8 secs, but have been told that they're not the dangerous kind and that I'm not a candidate for a pacemaker. 3 EPs have confirmed that it would make things worse, not better. This is our autonomic system gone awry.

Good luck to everyone. What a ride this has been!

Rene

I'm with Dani. It took me forever to find the right SSRI and at the right dose, but I've also gone from basically bed bound, house bound to being able to drive again and even exercise. I take 10mg of Paxil (generic) at bedtime. I think that in combination with the beta blocker has helped so much.

After trying numerous beta blockers, I have been on Acebutol (Sectral), 200mg for over a year. The only downfall is now my former 140 heart rate, sometimes goes extremely low. Mostly in the low 50's, sometimes in the 40's and a few time as low as 27 (cardionet monitor). So, now I'm taking it every other day. Still running low, but the drs seem to be ok with it. It's a capsule form, and 200 mgs is the smallest dose. Still it's made my life much more bearable!

Hi Ginger,

Paxil has been the only SSRI that I have had success with since being diagnosed. Prior, I was on zoloft for 8 year for fibro/cfs. I resisted, but persisted and thankfully, it's keeping me a bit more upright and able to do more things. I'm on a baby dose of 10mgs and started on 5mgs. I'm not upping it. My dr prescribed taking it at night, since it is sedating. I'm on the generic paraxotine by Teva USA. It's the only generic one I can take. Try to avoid taking generics that aren't made in the US or Canada due to the fillers they use and also the fact that they are not as regulated as they are here.

The only bad side effect for me, weight gain. I was too thin, at 88lbs, but I started both Paxil and the beta blocker acebutolol at the same time, so I'm not sure which caused the weight gain, but I'm up to 105 and am always hungry. (I should add, I'm only 5 ft tall!).

Good luck to you.

Rene

Oh Kexia, I'm so so sorry for what you are going through. I was in your shoes 2 years ago. Sick as a dog with this dreadful illness, and after 24 years of marriage my husband ups and leaves. I was forced to move out of my dream home and try to start anew. Not easy when you feel like crud and have no support from others.

I wish I could give you some grate advise, but I'm still trying to navigate myself around this and accept the fact that my ex has moved on (he married someone younger less than 9 mos after the divorce was finalized.

I'm sending you positive hugs and warm wishes. Please feel free to contact me if you want to vent.

xoxox

Rene

Here we go again. Can't get these adrenaline surges under control. Saw pdoc today and she suggested giving the zoloft a try even though it totally wired me the last time I tried. Keep in mind, that prior to dysautonomia, I was on it for 8 years with no problems.

My anxiety has been off the charts. She wants to start a small dose of neurontin (using it off label) prior to starting the zoloft to take the edge off. She wants me to take 25mgs today (so far, too chicken) and then again tomorrow. After that I am to take it twice a day and then on the eventually up it to three times a day and then add the zoloft.

Has anyone ever heard of this?

I'm so scared of trying yet another med. Wondering if it would raise b/p which is the one thing I don't need.

I'm a wreck and so medicine phobic as you know, dear sweet Bella. At my age, I should be able to suck it up and take it, but I hate the thought of it landing me in the ER.

Thank you so much for your support.

Rene

Oh Jenn, i'm so sorry. I feel your pain! I cannot for the life of me find a good cardio. i traveled all the way to Lankenau to see this guy who was supposed to get it, and he didn't!!!

Is the Bystolic and Propanolol not working?? Hasn't he ordered you a cardionet monitor for your low heart rate???

Someone recommended a cardio to me and you can't get to see him unless you are referred by your family dr!!!! I don't have an HMO but they will not take someone who calls in randomly!!! I never heard of such nonsense.

Sorry you are so frustrated. I don't think there's any cardios in this area (too far for you!!!) and I'm getting scared and frustrated as well.

I hope someone on the boards can recommend someone to you.

Sorry for what you are going through.

Hugs,

Rene

Hi Human,

I so feel your pain. I too know the despair of loneliness and just wanting some human comfort.In some ways,, we are similiar. I divorced when i was getting sick, had to move out of my dream home into a place that I hate, both of my daughters moved out and the neighbors here aren't friendly.

Most of my friends have deserted me, since they haven't a clue as to what is wrong with me. i long for the old me. This isn't the way i chose to be and feel that I am being punished.

I've been reading your posts and your writing is amazing. Please don't sell yourself short.

For me, loneliness is the worst part of this illness. Along with the brainfog. Last week i actually walked around looking for the phone and couldn't find it anywhere. it was in my hand the whole time!!!!! Talk about being scared!

Everyone on the Forum is wonderful. Caring, compassionate and truly lifesavers.

So glad you joined!

if you ever want to talk, please feel free to pm me.

Rene

hi Lieze,

i do the Ensure which i believe has the same ingredients as Boost. i've used Boost in the past as well. I really need to supplement to keep my weight up. Some days i may drink two but usually one a day. i have gastroparesis and eating isn't up there on my list. At least with the Ensure (I use the one with extra calories, I think each bottle has 350), I know i'm getting the nutrition I know that i lack since my diet isn't that great. Not sure taste wise, which one I like better. Sorry my shift key doesn't seem to want to work!

I would definitely stick with the Boost or Ensure just so you know that you are getting nourishment.

hugs,

Rene

Great post, Jenn!!

I got:

Anxiety

Menopasual Symptoms

Atipical Depression

Anorexia (turned out to be gastroparesis!)

PTSD (from going through a divorce, moving, being alone)

The best was from an ER dr who spent two minutes with me and wrote on my discharge papers: NEUROTIC!!

This was after being diagnosed with dsysautonomia. I still don't have the right drs and half don't get it! Heck, I don't get all this myself.

Hi. Sorry it's been awhile since I've posted. Things just haven't been going well. I feel like Im in a downward spiral. I just want we all do - some semblance of normalcy.

I've been having what my dr. calls hyperadrenergic surges. B/P heart rate go through the roof. I shake uncontrollably and it's almost like a severe anxiety attack. My dr even thought that's what it was until he admitted me to the hospital and found my white blood count had soared then dropped down to normal. He apologized profusely for thinking it was sheer anxiety. He did give me a shot of ativan, which calmed the shakes.

Anyway, at that point I was taken off an ACE inhibitor and put back on a low dose beta blocker. I hesitated since I knew that it could cause heart spasms. Variant, vaso or Prinzmetal's. Sure enough, I had lots of spasms which were helped with nitro.

Now my primary is telling me to take norvasc 2.5mg as needed but I never heard of it being dispensed that way. I've tried it in the past and found it caused funky rythms and high tachy. Also have tried Cardizem CD in the past and that just seemed to aggitate me.

My cardio said betas are the best thing and even if they cause spasms, that I should take nitro or go on a nitro patch.

Sorry this is running long. I know that betas are contraindicated for spasms.

Just wondering if anyone has had success with CCBs and which one worked and what side effects if any, did you notice?

Thank you all for still being here for me. It's been a rough couple of months and could use your support.

Hugs,

Rene

I have been on CCB for some years now, I was put on them due to massive BP highs, I tried most BB but they made my BP low's way too low and I would also get a lot of bradycardia. So I was put on CCB they have oddly helped reduce my angina type spells, (so it seems my angina type attacks were probably a rare form of angina!!!! ) I find if I do not take the CCB I get my Migraines with avengance, I realise why now, the cerebral spasms makes! so much sence! Infact it is leading me to think that many of my symptoms are due to spasams here there and every where.

Laura you know your body best and we all react difrantly to meds, I can say for me CCB's seem to be helping, I do have CEDS so I think my blood vesscels are affected, I guess that is why the CCB's might help me. I do not think CCB's have the same rebound thing as BB's so you can stop taking them any time, also CCB's do not react with so many other meds.

Hi Anna,

I read your post and wanted to know which CCB you are on. I also have super high b/p readings and possible variant angina. (Prinzmetal's). I've tried both the Norvasc and Cardizem CD in the past. I get spasms all the time not just in the chest area. If you wouldn't mind sharing your info that would be great. I was just concerned for myself since I read a study (I know they are all biased and not reliable) that women over 50 have a higher risk of heart attack and breast cancer on them but at this point I know I need something to control the b/p ,tachy and spasms.

Thanks again!

Rene

Lieze,

I know that paxil, zoloft an lexapro all come in liquid, if that helps! I can relate totally to the anxiety. Hang in there. I know the Xanax works for Jana, but it wires me. We're all different!

Rene

Thanks, Jana,

I emailed you. Yes, started on it. Day 5 and crawling out of my skin on 2.5mg. Will try to hang in there.

R

So sorry. I always read your posts and find it amusing that you have paxil in your drawer. you sound like me. Every drug has affected me in some weird way and I know I should be on an A/D. It's most frustrating.

Take care,

Rene

Not sure if any one can help but I'm in a quandry. I've been on a low dose of Paxil for two weeks. Not really liking the side effects. Saw my shrink today and she suggested going back on a baby dose of Lexapro. Here's where the situation gets sticky. Back in Sept. 08 prior to dysautonomia, I went into v-tach (non sustained for 9 beats h/r of 130). I happened to have been on lexapro at the time. It is a rare occurence but it is a documented side effect. I've spoken to a few different cardios who differ in opinions as to whether or not it's safe to restart the Lexapro. And things have changed dramatically since 08. Where I was usually bradycardic now I'm tachycardic. And my old b/p of 90/60 is a thing of the past. I may do a heart monitor but if nothing shows that doesn't necesarily mean I'm in the clear. I'm on a baby dose of metaprolol (6.25) but probably shouldn't due to possible vasospasms.

I'm just frustrated and don't know whether it's worth the risk. I've tried other SSRIs without much luck. Had no problem before dyautonomia struck! I will most likely be wearing a cardionet event monitor next week for 10 days.

Thanks!

Rene

Hi. I believe it to be hyperadrenergic POTS.

Not sure which drug would work best. Very much confused, as my b/p is high sitting, walking but as soon as nightfalls or I'm laying down it drops to below normal.

Good luck!

Rene

Hi. Having a problem with b/p. What else is new? Since I can't take bb's due to spasms and heart pauses, I was put on 1.25 mg of Altace since my b/p last week wouldn't come down from the high 170's/80 for a few weeks. Prior to then, I couldn't get my pressure to go up! I tried the Altace for 5 days, made me extremely nauseated and very hypotensive while standing, not to mention the feeling that I was going to pass out. The only good thing about the drug is that it's cardioprotective. I'm still on the wretched Coumadin for the clot in my leg. The dr. decided to switch me to Atacand 4mg which is in the catagory called ARBs. Altace is in the ACE family.

Mighty Mouse I know you take Cozaar which is in the same family as the Atacand.

I'm concerned about the side effects of the Atacand. Of course, reading everything online, two of the side effects are cardiac arrest and MI. I feel given my family's history and my wonderful history that I'm putting myself at risk.

I guess what I'm asking is a two fold question. Are these drugs good or bad for autonomic dysfunction and should I be concerned about the literature on the Atacand? And has anyone had good/bad experiences on either of these drugs?

Thanks for letting me vent my fears. Also, do you know if these drugs can increase heart rate? How I wish I could take a beta blocker. Very frustrating.

Rene

Hi Jana,

I used Prilosec a few times (before dysautonomia) and it gave me horrible palpitations. I then switched to Pepcid, which worked great but it was also before the illness struck. Now, when I take it, I get the rapid heart rate. You could ask your dr. about a non systemic medication (prescription) called carafate suspension. It doesn't taste great and you have to take it 4 times a day, but it seems to work for ulcers and reflux with very few side effects. I'm not allowed to take it anymore because it's contraindicated with gastroparesis.

Sorry for all that you are going through, my LS.

I'll try to respond to your email when I feel a bit better.

xoxox

Rene

Hi Rene! I have been waiting for my account to get activated to reply to your message. I am newly diagnosed for POTS, sort of. One EP did the tilt table test and said I tested positive. He referred me to another EP who isn't so sure. I definitely have a hard time standing up for even small periods of time and my heart rate increases. Still waiting for the 24 hour urine test and blood test to confirm. I am also on a thirty day monitor because I am waking up to nighttime tachycardia. My story is a little weird and must be told to get to your questions.

I started having SVT attacks in November. I was told they were the AVN-RT type. I had them weekly for a month. My heart rate would get up to 250 and wouldn't come down unless I went to the hospital for adenosine. Saw an EP who suggested lifetime medicine or an ablation which was supposed to be a quick easy fix. I chose to get an ablation. The EP wasn't confident he got rid of what he needed but said tie will tell. Three days later, I went to the gym to work out. Felt funny afterwards, went to hospital and found out I had a small pulmonary embolism. I probably got it from the procedure. That hospital was a difficult one for me. I started being sensitive to everything: benadryl, iodine, morphine. Also, during my visit, I had another SVT attack in my sleep which confirmed the ablation didn't work. My EP put me on Flecanaide. I was also put on coumadin (warfarin). I don't know why but I felt like crap afterwards. I thought it was the flecanaide so I wanted off of it and had another ablation a month later. Almost three months later, still felt like crap. I looked up the side effects for warfarin and it seemed like I had almost every side effect. I still have to take it for another two months so I am hoping that it will give me some relief. I think that is why the one doctor is hesitant to label me POTS because he think I need more time to get off of the blood thinners and allow my body to heal.

So I have had similar experience as you but right now I am so confused as to what is what and why. I am trying to accept that I just don't know and may not for awhile. I will post again about this subject in July when I am off this dirty drug.

I am so sorry for all that you have been through. You and I should be finishing the coumadin at the same time. I've never felt so awful in my life. The side effects are unreal. I'm tired of being told that bleeding is THE ONLY SIDE EFFECT! It's totally untrue. I have muscle spasms so bad that they wake me up. I'm so anxious and depressed that even klonopin doesn't touch it. I have zero energy and feel as if I weigh 500lbs just dragging myself around. We literally are ingesting poison.

I too got my blood clot as a result of a procedure. Horrible. Please PM me and I'll give you my email address. We can commiserate together.

I hope your symptoms abate, but I'm finding mine are getting worse with each passing day.

All my best,

Rene

Hi Alicia,

Thank you for your response. The drug is awful. I'm sorry for your friend. My former PCP told me that I am the poster child for coumadin side effects. She is wonderful but moved out of state. I've never felt so poorly. Exhaustion, body aches (worsening of fibro symptoms, headaches, heartburn, freezing all the time and the worst anxiety and depression I've ever had.

I wish I could use plavix but it's not indicated for a blood clot in the leg or lungs. And yes, it is made of rat poison. I would do anything to get off of this drug. I fear that it's making me so much sicker and non functional.

Thank you for sharing.

Rene

Hey Miss J,

I'm so sorry that all of this is happening to you. I don't have any good suggestions, just wanted to give you my love and support. You are very fortunate to have such a wonderful dr who can actually shed some light on the situation. I wish you all the best and will stay in touch.

with love,

Rene

Hi. As many of you know, I've had a major saga over the past two months. I'm presently being treated for a blood clot with Coumadin. It's week 3 and each day becomes progressively worse with side effects. For starters, bone chilling coldness, dizziness, headaches, light headedness, extreme fatigue (just what I need on top of what I've got!!), depression/anxiety, hairloss shortness of breath, muscle aches/spasms and heartburn. Another weird factor - not sure if it's related to the drug, but since my angiogram my b/p has been falling. Especially my diastolic. And my h/r which was always high at rest is now about 65 which I guess is normal. Then why do I feel so awful? My average b/p is 90/55. Not fun.

I've spoken to the woman who runs the coumadin clinic in the drs office and she said that the only side effect of coumadin is bleeding.Ha! Did research and found that not to be true. Also have been having nausea, cognitive problems and other things that I'm sure I'm forgetting.

The dr is nice and did speak with him yesterday but he was bascially telling me to deal with it and push through it. I actually told him (in a nice way) to take the drug for a week and let me know how he feels.

I was on aspirin therapy for 10 years as a precaution due to the horrible heart history in my family. They simply cold turkeyed me off of it which I was afraid of a rebound effect. Something about it thickening your blood? I know, doing too much research!

Has anyone had to deal with coumadin and experienced any strange side effects?

I do have a nurse that comes to the house as well as a tech to draw the blood thankfully since it's impossible right now for me to get out.

Any insight would be helpful. I did look at alternatives, which would be Arixtra but for 10 shots it would be $1,600 and that's for 10 days!!!

Thanks so much for listening.

Rene

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