Rene S.

Hi, thanks to all who posted. I'm not loving the remeron, that's for sure. I feel shakey and tired but at the same time, anxious.

I feel a bit short of breath and yes I do have dysautonomia. I've been on a low dose for 3 weeks and seriously am considering coming off. I know I'll have to taper but not sure since I'm only on 7.5 and that's only been for 4 days. Prior, I was on 3.75.

I do feel when I walk around that my heart rate is higher but when I take my b/p heart rate is ok.

Some days I'm hungry and some days, not.

I don't feel much or any relief from my anxiety but I just have such a hard time with the SSRIs.

I see the psych on tues and maybe she'll have some more wonderful drugs to throw at me!

I've noticed also headaches and burning pains in my shoulders, arms and chest and head. Can't explain it except that I feel like those parts of my body are on fire, yet I'm freezing.

So, not sure if this drug is great with our condition. Oh no weight gain so far, which I need!

My eyes seem to be blurry and dry and my mouth is like cotton.

I'll keep you updated and please let me know if anyone else is on this.

Thanks.

Rene

I know that the usage of Remeron (or generic) has been discussed on the forums before. Many are older postings.

With all that I've been going through lately, and having the worst time getting on an SSRI, my psych recommended Remeron (taking generic). I was skeptical and scared. It's not as heart safe as many of the SSRIs and given my family's horrible history, I was reluctant. I've been on it over a week at only a baby dose (yes, my dr. gets that we are super sensitive) and take 3.75mg. I have missed a few nights here and there and tonight she wants me to up it to 7.5mg. She's very thorough and weighs and takes my b/p everytime I see her However, I have noticed and told her, that I do get weird palps and some chest pains. There is a caution on the drug store insert about consulting your dr if you have angina or a hisotry of high cholesterol (mine is ok, but I do think I suffer from Prinzmetal or variant coronary spasms) so of course, I worry. The drug does give me my appetite which I need since I'm only 89lbs and need to put on at least 15.

IT doesn't help with the autonomic dysfunction (that's for sure!) and I find myself stumbling around more and feeling out of it. I'm hoping this will pass. Just mainly concerned about it increasing my b/p.

Is there anyone who has taken it who has had success? I may start in a few weeks adding zoloft to the mix per my dr's instructions. I just need this anxiety to go away and the depression that ensues from it.

Of course, I read the literature and when it says MI may be a side effect, I start freaking out but I realize that they have to list that even if it's not a direct result of the medicine.

So, please wish me luck and I would love to know if anyone who has any heart problems or anything else has had success with this drug.

Thank you so much for being here for me. I have labeled myself has having pharmacobia, fear of drugs!

Hugs to all,

Rene

This year has been a rough one for me. I've been sick for almost a decade now, and while I've had my ups and downs I've never really gotten better. Then in June I caught my husband cheating on me, and rather than work things out he decided to leave and file for divorce. When he left I lost a lover, my best friend, a caretaker, all my money, my insurance, and my house. (I even lost my reason for living, since I had been able to get by knowing that at least I was helping him find happiness). I had to move back in with my parents, who live out in the middle of nowhere. I feel alone and very scared.

I know, logically, that I can get past this. I know people have been through a lot worse than me and come out alright. But it's getting harder and harder to even want to try. At first I was optimistic, and made plans for schooling, for finding a job, for getting a social life. I made a strong commitment to exercise, and learned how to enjoy being away from all the negative aspects of my husband (how he always quit when things got hard, judged others, avoided dealing with anything, chose popularity over morality). But then I get sick and realize how far fetched all my plans really are. And I get angry at my ex all over again for not being willing to even try--for once again taking away my choices, and scared that the life I live now is the only life I will ever know. No kids, no job, no life.

I know I need to accept things as they are, but I just don't know how. All I want to do is play the 'could have been' game over and over again in my head. I've tried therapy, I've tried anti-depressants, I even re-tried religion, but nothing has worked. I have to have some sort of meaning in my life to be able to keep trying and right now I don't. Without something to focus on, all I want to do is sleep and cry and think about killing myself (I won't, but that doesn't keep the thoughts from coming anyway).

What am I doing wrong that I can't handle this? I feel so desperate right now.

Oh KeXia,

My heart goes out to you. I feel horrible for what has happened to you. I'm so sorry to say that I can totally relate. My husband left me as well, after nearly 25 years of marriage. At the worst possible stage of my life. Dealing with this illness, Fibro/cfs and having my girls leave the nest. It's been horrible but I'm so glad you have your parents by your side.

I know it's not easy to start anew. For me, it also meant leaving my home that I loved to move into a townhouse that I hate. No friends nearby and neighbors that don't even acknowledge my existance.

I wish I could wave a magic wand and make it all better for all of us

You will get through this, that's what I tell myself. Be kind to yourself. Please, please, email if you'd like. I'd love to have someone who knows first hand of this experience.

We all here rooting for you on the boards.

Life is just so unfair sometimes. My ex is already remarried and never once calls or emails me to see how I am. That hurts. I pray that things get easier for you.

ruekat@comcast.net

Big hugs,

Rene

This year has been a rough one for me. I've been sick for almost a decade now, and while I've had my ups and downs I've never really gotten better. Then in June I caught my husband cheating on me, and rather than work things out he decided to leave and file for divorce. When he left I lost a lover, my best friend, a caretaker, all my money, my insurance, and my house. (I even lost my reason for living, since I had been able to get by knowing that at least I was helping him find happiness). I had to move back in with my parents, who live out in the middle of nowhere. I feel alone and very scared.

I know, logically, that I can get past this. I know people have been through a lot worse than me and come out alright. But it's getting harder and harder to even want to try. At first I was optimistic, and made plans for schooling, for finding a job, for getting a social life. I made a strong commitment to exercise, and learned how to enjoy being away from all the negative aspects of my husband (how he always quit when things got hard, judged others, avoided dealing with anything, chose popularity over morality). But then I get sick and realize how far fetched all my plans really are. And I get angry at my ex all over again for not being willing to even try--for once again taking away my choices, and scared that the life I live now is the only life I will ever know. No kids, no job, no life.

I know I need to accept things as they are, but I just don't know how. All I want to do is play the 'could have been' game over and over again in my head. I've tried therapy, I've tried anti-depressants, I even re-tried religion, but nothing has worked. I have to have some sort of meaning in my life to be able to keep trying and right now I don't. Without something to focus on, all I want to do is sleep and cry and think about killing myself (I won't, but that doesn't keep the thoughts from coming anyway).

What am I doing wrong that I can't handle this? I feel so desperate right now.

Oh KeXia,

My heart goes out to you. I feel horrible for what has happened to you. I'm so sorry to say that I can totally relate. My husband left me as well, after nearly 25 years of marriage. At the worst possible stage of my life. Dealing with this illness, Fibro/cfs and having my girls leave the nest. It's been horrible but I'm so glad you have your parents by your side.

I know it's not easy to start anew. For me, it also meant leaving my home that I loved to move into a townhouse that I hate. No friends nearby and neighbors that don't even acknowledge my existance.

I wish I could wave a magic wand and make it all better for all of us

You will get through this, that's what I tell myself. Be kind to yourself. Please, please, email if you'd like. I'd love to have someone who knows first hand of this experience.

We all here rooting for you on the boards.

Life is just so unfair sometimes. My ex is already remarried and never once calls or emails me to see how I am. That hurts. I pray that things get easier for you.

ruekat@comcast.net

Big hugs,

Rene

Hi. I know many of you are on betas. Unfortunately, I had to give them up due to coronary spasms. I also suffer from extreme labile hypertension.

I was given a few options by various drs and I'm just not sure. I did do the ambulatory b/p monitoring. Lots of highs during the days, but very lows at night. The nephrologist/hypertensive specialist is not alarmed and said that my b/p would have to be 160 over something most of the day inorder to qualify as a problem. Ha!

Kayjay, I'm so upset. I was due to see Dr. Hernandez yesterday but due to the Septa strike I couldn't get there. I feel that she would have had the answer! Broken hearted. I did see a Dr. Fania Samuels who is affiliated with Hahneman and she recommend a dr at Hahnemann. Dr. Scott Hussen (sp?) for autonomic dysfunction.

Anyway, I digress.

I was given a few options on how to be treated for the high b/p, tachy, spasms, etc.

1. Metoprolol with Imdur

2. Metoprolol with Norvasc

3. Imdur by itself

And by Dr. Goodkin any drug that I want! He's not been very helpful. Nice guy, though.

And by the awful Nephrologist who is not YET ready to treat me, labetalol with nothing added for spasms, since she neither believes I have autonomic function or coronary spasms.

Sorry this is running long I'm just frustrated. I'm basically told to pick my own meds and go from there.

Any advice or suggestions would be welcomed. This can't go on like this much longer.

Jenn, thanks for always being there for me. You are a lifesaver!

I wish one of the drs would read this post and add a comment. For now my head is spinning and my heart is racing.

Oh I also did the spit/urine test to check catecholomines, neuroepinephrine, serotonin, gaba, etc.

Very interesting findings. I'll put that in another post.

So, my main question is can you take norvasc and metoprolol together? Harm?Benefits? Sheesh!

Thanks everyone.

Rene

Sue, I had almost the same reaction. I took 1/2 of the smallest pill dose and it accelerated my heart rate and made me feel awful. That was the end of that!

Our bodies are so sensitive to drugs it makes me wonder what in the world is happening?

Glad you were able to feel better quickly. I had taken it at night and just listened to my heart pound.

Sorry for your experience.

Rene

Hi Kari,

I took lyrica for a week (and it was before the dysautonomia). I started on a small dose and took it at bedtime. I didn't wake till 8 the next day and was in a stupor the entire day. I continued with it for a week, going with a lower dose. It started giving me awful palpitations, but you might not experience this since you are on a beta blocker.

I never gained an ounce on it.

Give it a try. For me it didn't do anything for the fibro but everyone is different.

Rene

Yes, I notice that as well. I have gastroparesis and get full very quickly so I thought perhaps it was my stomach pushing everything up and causing the palps.

Rene

I've been having loss of vision lately and it's been scaring me due to the fact that my b/p is up so high then down. Scared to death that I was ruining my eyes or damaging my retina.

Saw a retina specialist today - anyone in Bucks County, PA who needs one, this guy is great! he knows all about dysautonomia and even mentioned Blair Grubbs name! I told him what's been going on, blurring, double vision shadows, etc. He told me that just as the dysautonomia affects the muscles in your body by weakening them it can do the same in your eyes. So, I haven't YET damaged my eyes from the pressure issue. He even did an ultra sound of my retinas Very cool.

So one more thing to add to my list of symptom.

Anyone else having visual problems? My presciiption in my glasses hasn't changed in over 2o years, now all of sudden I need a stronger lens. Just another day in the life of autonomic dysfunction.

Rene

Hi. I've had fibro/cfs for 9 years. It was hard in the beginning but I seemed to handle it ok. I was on a regimen of zoloft, klonopin and skelaxin. Nothing to me is worse than POTS. I can't even function with this one. Oh, the other thing that helped greatly with the fibro - chiropractic care and weekly massages.

Rene

Sorry lisabeth,

I have the opposite problem! And it's no fun. My body burns through calories with the high heart rate and also due to the gastroparesis, eating is no fun whatsoever.

There should be a happy medium for all.

As for exercise, just going up the steps a few times a day is my daily work out! My heart rate goes sky high!

Rene

Hi Nina, I'm so sorry for what you're going through. Oy Vey is so right! Do you see Dr. Fisher at Temple? I never did do my appt there. I'm so bad. But I'm so tired of drs.

Please rest up and take care of yourself. Feel free to PM me and I'll give you my phone number if you want to talk

I hope Wilbur keeps you comfy and warm.

Hugs,

Rene

Hi Rene~

Webmd.com has a lot of information about Taurine under it's drug and supplement tab. All of the sources I looked at implied that Taurine is similar to an amino acid, and that it would help with protection of your heart and also bring hypertension down. It's been proven safe in studies of up to one year. I think the only uncertainty about it's safety is in longer-term usage. It sounds like this may be a good option for you.

Good luck and let us know how it works for you!

Jana

Hey Jana,

I did see the info on wedmd. thank you! I just want to make sure that it's very safe since it's also in the drink red bull with caffeine and articles about that say that it can raise b/p. I'm ready to throw in the towel.

I have to do hormone testing via saliva and also testing for food intolerances and how I metabolize meds.

I'll buzz you tomorrow.

Thanks, LS

xxoxo

BS

Hi Rene~

Webmd.com has a lot of information about Taurine under it's drug and supplement tab. All of the sources I looked at implied that Taurine is similar to an amino acid, and that it would help with protection of your heart and also bring hypertension down. It's been proven safe in studies of up to one year. I think the only uncertainty about it's safety is in longer-term usage. It sounds like this may be a good option for you.

Good luck and let us know how it works for you!

Jana

Rene- I think Jana makes a lot of sense. When I went to see a holistic dr. it was a mess. I agree with the concept though.

Just make sure that your meds - if you take anything - don't interact. My one thought is maybe you could take more taurine though food (if you are worried). That way you really could not take to much... this comming from a girl who is taking CoQ10 2times a day with meds!!

One other thought. I was told that I really don't have a High Blood Pressure problems (just hyperadergenic POTS). I was eating celery and drinking cranberry juice wich was the wrong thing!!!!

I have to say with Dysautonimia I would not let any one treat me for High Blood Pressure. Mayo clinic told me this was a symptom not a problem. I would never want anyone of us to take a diuretic ( natural or not)!

Hi Kayjay,

Who did you see that was a mess? Hope it's not the same person! I took take Co-Q-10 100 mgs.

Wow, I try toget so much potasium in bananas, potatoes, prunes, orange juice. The weird thing is that is holistic dr doesn't think I have "normal" high b/p since when I was sitting it was 125/67 then when I got up and walked around and sat back down for a few minutes it skyrocketed to 176/80. At home today it's been high, yet when I lay in bed I get it 123/66. driving me crazy. Hypertension runs through my entire family (what's left) and I'm wondering if I don't just have simple hypertension.

I have horrid headaches, palps and dizziness when my pressure goes up and I shake. I can feel these things.

The only med I'm taking at the moment si a small dose of klonopin and I didn't see any interractions between that and the taurine. I need to do more research because I don't want to take nearly as much taurine as she's recommending. Sheesh.

Thank for your imput!

R

I think I took Taurine a few years back I can't recall any side effects at all.

I don't have a problem with gluten but I certainly have had to eliminate sugar from my diet. No worries on the weight loss, I find for me I that I can stabalize my weight much better with natural fats (butter) and whole foods (beans, brown rice) than I can with refined products in any event.

Good luck, and let us know how it goes.

Hi EM,

Do you remember how much taurineyou took on a daily basis?

Any side effects? I took one today and my presure might even be higher! Grr

Hi. I went to a holistic medical dr today for my h/bp, dysautonomia, fibro, coronary spasms, etc.

She has me starting with 2 capsules of Taurine daily of 1,000mg each.

She also has me on magneDerm Transdermal magnesium, and iron chelate and something called ultra inflamX which is a medical food.

I'm more concerned about the Taurine.

Is Taurine safe?

She's an MD so I hope she knows what she's doing.

She wants me to eliminate sugars and gluten from my diet which I need since I'm very much underweight.

Any insight on Taurine (just Taurine it doesn't say L-Taurine) would be appreciated.

Thank you.

Rene

Hi. If anyone wants to facebook me I'm under

Rene Schechter Klein

Thank you.

Thanks, Jenn. It's horrible to be shaking all of the time. I don't know which is worse - the internal or external. My body temp is never more than 96.5. And I find just from walking around seems to aggravate it more. Unless I have a coat on in 70 degree weather!

Rene

Hi. Since being diagnosed last year, I've experienced shivering and shaking even when it's not cold. This seems to be getting worse. The last couple of days it's been cooler here on the east coast and you would think that I was in Siberia. I'm fine sitting, but once I get up and walk around my body starts shaking and shivering like crazy. I even walk around with a blanket or a coat. Even outside I'm cold, while others are in t shirts. It's hard to explain but it's more like it's internal then becomes external. I'm always bundled up, but my face gets hot!

I've had some wild fluctuations with heart rate and especially blood pressure for the last month or so. I also notice that when I'm cold my b/p seems to elevate. Once I'm warm and under tons of covers, my b/p comes down to normal and my heart rate isn't as high.

Not sure if this is related or maybe just a lack of conditioning. The other day I had to drive to somewhere that was about 1/2 hr away (I haven't been driving due to all the fluctuations) and I wasn't sure if I was going to make it home. My h/r was through the roof and I was shaking so. I had my water bottle with me and talked to myself saying "you're almost home". Now since, I've just been wracked *** chills.

Is this the fight or flight gone into over drive? A reaction to the constant ups and downs of b/p and h/r?

Any advice would be appreciated.

Thank you

Rene

Hi Julie,

Yes, I too am in the same boat, unfortunately. Mostly homebound with this illness. Due to fluctuations in b/p and h/r and just sheer exhaustion I find it more and more difficult to get around.

I too am single after being married for 25 years. Hard adjustment. My girls have left the nest and I've moved in January and don't really know anyone here. I do have two cats but unfortunately, they can't talk.

Most of my friends have their own lives and basically have forgotten me.

I spend my days on the computer, chatting with friends, doing some reading when I can and basically living a life that I have not chosen for myself.

I'm sorry that we are in this boat. I wouldn't wish this on anyone.

I used to be vibrant, loved to go to parties and entertain. This struck me about a year ago and I haven't been the same since.

Rene

i have GI issues.

At the start (a year ago) it was very hard to eat anything, no appetite, aversion to food and food smells, nausea, churning, felt like heaps of air in my tummy.

It got worse at the start of the year. i felt full eating very little, it was hard to get food down, palps after eating, sometimes full reactions such as sweating bp rises ligt sensitivity. biggest problem though i felt full after eating small amount. it has improved a little after starting florinef but it is still not one of my favourite things to do!

anyway i had a gastric emtying scan that turned out normal. i dont know the exact figures though. the dr has suggested a mammotry study as this can diagnos gp too.

im not sure whether to go for it. i know there is something wrong with the GI system but the thing is i have a bowel movement every morning (& as gross as this is to share ... its ussually a pretty big BMlike everything i ate the day before comes out)

so can it be GP if i have regular BM movemtns? or should i be looking at other things?

Wow I could have written your post. My symptoms started a year ago as well. As a former person who had to watch her weight this is so different. I have no desire to ever eat. Smell of food make me sick, I get full on a few bites and I don't even enjoy eating. I drink lots of Ensure and am trying to put the lbs back on and it's been a struggle.

I wish I could tell you I found a magic pill but have not. My gastric scan showed severe gastroparesis. My GI dr didn't wat me on the Reglan on the other drugs since he knows how sensitive I am to meds. I'm also allergic to compazine and he thought that might be a problem.

I have kept my bowel movements regular by taking magnesium every night. Last night I forgot and I haven't gone at all today which will be a major struggle tomorrow. However, I also have IBS.

Perhaps another scan is in order? You have all of the symptoms of GP.

I wish you well and try some of the ensures. The strawberry and Butter pecan aren't bad. Make sure you get the ones with the extra calories. And try to stick to the brand. My daughters got me the generic and it was too gross for words.

Oh, soft foods work best. Yogurt, mashed bananas, soft cheeses small pieces of chicken. Nuts can aggravate as well as raw vegetables.

Rene

Marni, my heart breaks for you. Truly. I've been there and hate it. My ex divorced me after almost 25 years of marriage. He left me at my sickest and just remarried last month to someone much younger and whom he had worked with.

It's still overwhelming for me. At 50 to have to start over and not feeling well to boot. Whatever happened to in sickness and in health?/

I feel your pain and loss. People keep telling me to get over it, but that's easier said than done.

Feel free to PM me and we can chat.

I wish I could say I have a supportive family, but besides my daughters whom have left the nest, I have no one.

I never knew anything could hurt so bad.

Take care of yourself and please do PM me.

Hugs,

Rene

Stephanie,

I feel for you. I have the same thing. Many of my so called friends have dropped me because of my invisible illness. They don't understand there are days that I can't move or feel like dirt. When I need them the most, they are no where to be found. As for family, my girls, they just believe it's purely psychological. Even though I have med reports they still think that I bring it all on myself.

For awhile, friends and family were starting to believe I was anorexic However, when I was tested and diagnosed with severe gastroparesis, that's when they dropped the anorexia nonsense.

I'm sorry you are going through this.

Rene

I know I have posted about hair loss. Right now I am losing hundreds of hairs every day. I think it a reaction to the horrible spring I had - intense episodes over the course of months. I also take klonopin and I need it. Do any of you attribute hair loss to this drug? I take .05 at bedtime... very small amount. I would have to be really convinced that this was my problem to even consider stopping.

Sorry If I am "beating a dead horse" ewww gross expression. But I really don't want to be bald at 36!

Hi kayjay,

sorry to say, just in my opinion, from someone who's been on klonopin for 9 years at a larger dose than you, that I don't think it can cause hair loss, but that's just me. I've lost hair from other things such as aging! LOL.

If it works for you than stick with it. Have you only discovered this since starting the klonopin?

Take care and be well,

Rene

Hi Potsgirl,

You are always in my thoughts and prayers. I will be praying for you and your mom. Hang in there honey.

I'm here for you whenever you want to talk.

With love,

Rene