Rene S.

Hi. I've been plagued since my so diagnosis of the most erractic b/p readings. My life before Dys. was normal with b/p readings of 90/60 and h/r 60-70. Now, it seems like with each day, they just keep getting more and more erractic.

For instance, I was sitting down quietly on the bed, which seems to be the only way I am comfortable. My b/p was 110/72, hr 82. Turned over and it changed to 124/74, hr 84. Then, I decided to go downstairs grab something to eat and came right back up. I started shaking and feeling awful. Sure enough my b/p was elevated to 177/82, hr 103 (while sitting). Then went to 178/79, hr 86. Grrr. I know, put the cuff away, but I hate the way I feel. Is sitting in bed what I'm doomed to do for life in order to feel "normal"?

I was tested in Dec. for a Pheo. I'm demanding another test for it. I take a few steps and my b/p is elevated as well as my h/r and I get a wicked headache. Seems like all on the boards complain of low b/p which I had in the beginning of my diagnosis but never severely low.

Does anyone have a clue as to what's going on with me? The drs here don't get it. When I look of pheochromocytoma I have most of the symptoms. And my endo says impossible that it's anxiety that's driving my b/p up. Now I know anxiety can do that, but to this extent?

Please, any comments or imput would be greatly appreciated. I will drive myself nuts!

Thanks

Rene

PS. I'm not on an beta blockers, can't tolerate them. Maybe I need to be!

Hi Gayle,

Wow, you are tiny. I'm 5'1" and now at 89 lbs and gettting more and more scared. I did the carnation instant breakfast and the ensure and some protein shakes from the health food store. I can't do 2000 calories a day either. I have no appetite and even though I was eating more sweets lately no weight gain. And last week I took a 5 min walk and lost 3 lbs the next day. I've expressed this over and over again to drs and they just keep saying eat more. Easier said than done. We have so much free floating adrenaline that I think it revvs up our metabolism.

I feel your frustration and worry too!

Rene

Hi Rene,

You're very tiny as well and I can relate to your concern. Do you find you have more of an appetite on some days and no appetite on other days? For some reason, I can have a normal appetite one day and then absolutely no appetite the next. On those days I have to force myself to eat. My Drs are also telling me to eat more and I agree with you, it's much easier said than done.

I wish I was able to tolerate Ensure or Carnation Instant Breakfast although lately they don't seem to help.

Hi Gayle,

Yes some days I can eat and others I don't even think of food. Like yesterday. I had an ensure for breakfast and nothing else till much later. I felt awful. Today I consciously decided I have to eat. Breakfast was an ensure with a piece of whole wheat bread with almond butter. Lunch was some vegetarian dumplings and a banana. This afternoon I ate a yougurt with almond butter in it. For dinner, some quinoa and cheese, grape juice blackberries and another ensure! I'm so full and it's not a good feeling. But I don't know how to get the weight back on. Then after eating/drinking I'm shaking. Go figure that one out! This is getting tiring for sure!

Rene

Hi! Yikes. I did cut it in half while it was on my body, and it was there for 4 days (it was due to be changed tonight). I just pulled the rest off. Do you think I did any harm? I know the women on Earlymenopause.com have been doing this and now I'm scared of what I may have done to myself! Sheesh! Never a dull moment. But I'm hoping since it wasn't a fresh patch that I cut but one that was due to be changed that I didn't throw my body into an even more weakened state!

No, drs never speak to one another. It's crazy. Just file our info in the chart, which their staff probably does and they don't peak at it until our next visit.

Take care!

Rene

PS Please let me know if I totally messed up by cutting the old patch on my body. I looked at as what if part of it came undone due to the adhesive wearing off??

Hi Jennifer,

I think I misworded about my b/p. The patch didn't cause it to go up. It's been that way all week. I was concerned because I thought that estrogen was contraindicated with high blood pressure, even though in the morning and night it's low to normal range but if I go outside to get the mail, come up the steps, it's sky high. I'm just so baffled by all of this! And no, I haven't gained an ounce and I no longer get a period. I went through early menopause at 42 and have been on hormones for 5 years only recently stopping them 6 months ago. I guess it's ok just to yank it off since I've only been on it for 4 days???

Thanks, Jennifer!

Rene

Sorry, I forgot to ask how long you were off the patch before resuming it?

Hi. Sorry for the confusion. NO, the patch didn't cause the blood pressure fluctuations. They have been happening since the diagnosis.

Thank you I thought I was imagining it but since I've had the patch on, I'm more anxious (if that's even possible!) I was due to change the patch tonight, but I actually cut it in half and will wait to talk to my gyno on Monday.

The endo thought the patch would help with vasomotor problems. I just don't know what to do. I don't tolerate beta blockers well but do have the in the house. I just think my anxiety is just at an all time high right now.

Thank you so much for replying. I may just pull the rest of the patch off and wait till Monday. Do you think there will be any harm just stopping it after 4 days? It was due to be changed today. And I worry at my age of having a stroke or heart attack. As if I don't have enough to worry about with the dysautonomia. Seems like none of the drs speak to one another. They just write letters of the visits and I guess it just gets filed in my chart! Gone are the days of drs truly caring.

Hi. I was on the Vivelle Dot 0.0375mg for 5 years. I discontinued 6 months ago (prior to dysautonomia). Back then, my b/p was consistantly 90/60 and h/r of 60. (how I long for those days!).

I started back up on the dot Weds. Both the cardio and endo thought it may help with some of my symptoms.

But I have extreme fluctuations in B/P from anywhere from 119/60 to 165/90 and h/r from the 80's to 125. (This is prior to the patch use - the patch didn't cause this! sorry for the confusion!) Now I'm wondering if I'm doing more harm than good being on the patch again.

I spoke just now spoke to a gyno in the practice and she of course knows nothing about dysautonomia.

She said that if my b/p remains consistantly high there is a chance of stroke.

So, should I pull this patch off and wait to speak to my regular gyno on Monday? I can't say that it's helped so far and I even may feel more anxious or that could be just because I'm worrying about.

So any of you ladies out there who have had experience with HRT and having the b/p all over the place,

please let me know! Also, I'm not active and I know that increases the risk for blood clots! Sheesh!

Thank you.

Rene

Hi All,

I am the same way. I am 5'2" and down to 91 pounds now. I lost about 15 pounds when I first got ill, and after being a stable weight for several years, I have lost nearly 10 pounds in the past two years as my dysautonomia has gotten worse. It is strange because all I do is lay on the couch all day and eat six to seven times a day. I know that I have lost a lot of muscle mass, and I think that at least some of the weight loss can be atributed to that, since muscle supposedly weighs more than other tissue. I also wonder if it is related to the amount of stress dysautonomia puts on the body, and whether or not it makes us somehow "hypermetabolic". It is still scary for me because I am afraid that my body will keep getting weaker. It is nice to hear that others are experiencing the same thing though.

~ Broken_Shell

Broken shell, you and are identical! I can't exercise, lay around and try to eat and you're right because even my daughter said muscle weighs more than skin/tissue and that I've lost muscle mass. I'm terrified of getting to the point where I won't be able to walk. I don't even drive anymore!

Food has no appeal to me and I force myself to eat.

My thoughts are with you.

Rene

I just noticed your post on weight loss and wanted to let you know I'm going through the same thing. I've been losing a lot of weight over the past few years. The weight loss seemed to initially get triggered by a stomach virus and then every time I got sick with something else, bronchitis etc..... I would lose a few more pounds and not put them back on. or ....put a few pounds back on only to lose them again.

I'm 5'4" and down to 97 pounds. My PCP recommended Carnation Instant Breakfast which I can't tolerate anymore. Same with Ensure. My nutritionist says I need to take in 2000 calories a day which is way too much for me. I'm extremely frustrated and a little worried that something else might be going on.

Hi Gayle,

Wow, you are tiny. I'm 5'1" and now at 89 lbs and gettting more and more scared. I did the carnation instant breakfast and the ensure and some protein shakes from the health food store. I can't do 2000 calories a day either. I have no appetite and even though I was eating more sweets lately no weight gain. And last week I took a 5 min walk and lost 3 lbs the next day. I've expressed this over and over again to drs and they just keep saying eat more. Easier said than done. We have so much free floating adrenaline that I think it revvs up our metabolism.

I feel your frustration and worry too!

Rene

Gary, I'm so sorry for what you went through and I shudder since I can relate. For the last 2 weeks my body has been in pure adrenal overdrive. I saw a new endo the other night and he basically dismissed it as "anxiety disorder". Hello??? I know I have anxiety but this has been awful. My b/p is sky high and my pulse has been as well. I'm shaking more than usual and the endo even though my aldosterone levels were low and renin high refused to do further blood work. He kept saying go see a psychiatrist because all of the adrenal will eventually kill you. I asked him to check for a pheo (adrenal tumor) since I have so many symptoms, but he said impossible and dismissed me. It's getting frustrating to say the least.

And I take klonpin which usually works, but it's not touching it now. So who knows? A flare up and I feel awful.

So sorry that you went through this and hope you are doing better now.

Rene

Almost anything we try will take weeks.not overnight. We are replintishing our supply of estrogine or whatever it doesn't happen immediately. I had to use the dots a ring and cream until I had replentished. M

Thank you , Miriam. I'll let you know what happens.

Rene

Thanks, yes I called my gyno's office and the nurse said the same thing. But I'm still not sure if the estrogen is the way to go.

Hi Sophia,

Yes, the man who I thought was wonderful I now have doubts about. No blood work, and I talked to him last night because I thought that I might have an adrenal tumor (pheochromcytoma) because all of my symptoms match. he wouldn't hear of it. And I'm now leary of yet another dr. And when I questioned him about repeating the aldosterone and renin he kept saying that I had to stop dwelling on it and that I have an underlying anxiety order that needs addressing. So, I'm back to being discouraged once again.

I don't even know if it was right to start back on the patch. Grrrr. I wish there were more female drs dealing with all of our issue. I think they'd get it! Oh I'm on the lowest dose of the patch. That was given to me by my gyno.

Rene

Hi. I had my consultation with the endo last night. Very nice man. Spent 2 hours with me! And no blood work! We had a very long discussion and he feels that my adrenals are shot but he feels it all began when I was taken off my hormone patch. He says my body is craving estrogen and it has put me in a tailspin. He wasn't worried about the Aldosterone/renin levels because he said they are supposed to be taken laying down and I was sitting. Also my potassium was fine. He thinks that all of my autonomic nervous system is so messed up that I'm running on pure adrenaline. Yes, that's what it feels like to me. He thought the estrogen would calm me down and also suggested that with all the stress I've been through the last couple of years that I'm suffering with major anxiety. He would like to see me on an A/D but I have such a hard time with them.

So, here's my question - why is it that even though I applied the patch last night around 8 I feel so lousy? How long does it take to get into your system? I didn't have any affects the last time 5 years ago but then again I wasn't plagued with the dysautonomia.

Any insight on the estrogen would be greatly appreciated! I'd love to hear from those who are on the Vivelle Dot or any other estrogen therapy.

Thanks!

Rene

Though High Renin and Low Aldosterone does point to Addison's you won't get a diagnosis UNLESS your cortisol is also low AND doesn't respond to ACTH stimulus.

I'm in the same boat as you. (My normal values are different, not sure why??? different lab perhaps) My Aldosterone is low (2, normal 3-16) and my renin is high (10, normal .5 to 6) and my morning cortisol was on the low side (8, normal 8 to 22) BUT my adrenals respond beautifully when given ACTH. It bumped my cortisol up to 30 from 8 and I felt wonderful. Because my adrenals responded, I was considered to not have Addisons, just hypoaldosteronism, (which, as far as I can tell, is not a disease in the medical literature).

I was given Florinef to combat the low Aldosterone, and I couldn't tolerate the Florinef so I live with this. Hormone replacement, if you can tolerate it, IS the answer. My big problem with Florinef was that it activated a whole other set of hormones, that my then boyfriend couldn't deal with. Maybe I should give it a try again.

Sara

Hi Sara,

yup, same boat. Wow, I think I told you that all this began when I was taken off my hormones and antidpressant. Maybe going back on the HRT is my answer! As for florinef, my pressure runs on the high side so I don't know if that would be the answer.

I will definitely as the endo tonight. keep your fingers crossed for me!

Rene

Hi. I called my primary for some test results and his nurse gave them to me and said to follow up with a renal guy but I don't think that is the answer. I didn't even get to speak with the dr. himself. Hopefully he will call me back.

It was Aldosterone .4 - (1.5-18.2) is normal

And Plasma Renin 5.2 - (.65-5.0) is normal.

I know it has to do with the adrenal glands and maybe that's why I feel anxious all the time, thirsty and urinate frequently.

Have you had an MRI of the Adrenal Glands? If anything, this is good news! If there is a malfunction of your adrenals, it could explain ALOT if not all of your problems. Adrenal fatiuge and malfuction cause high HR, inability to handle stress causing EXTREME anxiousness and stress, inabilty to control temp. regulation, hormonal malfunction...I could go on and on. If it is the adnenals, your going to feel better with treatment....

My doctors were hoping it was my adrenals but, all tests came back normal. I hope this is the answer for you and you are on your way to recovery!

Hi Kimi,

I had a cat scan done of my adrenals back in Dec. (no contrast). It showed a slight thickening but I have no idea what that means. I never went back to that particular Endo since he told me he thought I had cancer due to the rapid weight loss and he wouldn't see me again until I went to an oncologist. What an idiot.

My symptoms have only gotten worse as far as the extreme anxiousness. Klonopin isn't doing anything and I have a constant headache.

Do you know what the treatment is if it is my adrenals??

Thank you for your imput!

Rene

Hi. I called my primary for some test results and his nurse gave them to me and said to follow up with a renal guy but I don't think that is the answer. I didn't even get to speak with the dr. himself. Hopefully he will call me back.

It was Aldosterone .4 - (1.5-18.2) is normal

And Plasma Renin 5.2 - (.65-5.0) is normal.

I know it has to do with the adrenal glands and maybe that's why I feel anxious all the time, thirsty and urinate frequently.

I'm so scared and being alone only makes things worse. I do have an endo appt tomorrow night but not sure if he's used to us "people". I met someone on the boards yesterday in person and she's telling me that I should see someone in Baltimore. I won't go 5 mins now from my house without a breakdown so I can't imagine traveling that distance. If someone went with me I would stand a fair chance.

Can someone shed light on this? Would going back on hormone replacement be the answer?

I will see an endo guy tomorrow night and hopefully he's familiar with "our people"!

His name is Ned Weiss and he's in Willow Grove, PA. Anyone familiar?

Thank you.

Rene

Hi. Does anyone get tingling/burning numbness in arms fingers, hands toes, feet? This is new and it comes and goes but lately its' been staying.

And sitting up is worse I get shoulder pain and chest pain. And a constant headache. It seems to get brushed off by ER drs but I'm feeling worse with each day and now I don't know what I should do!

Thanks, just needed to see if anyone gets this.Oh and when typing my fingers get cold and achy.

Rene

rene-

just wondering how you're doing in terms of managing to eat/ drink as much as you can? and wondering if you've had a gastric emptying test? it's not invasive in any way so there's no reason for your doctor to want to hold off on that one due to your being weak, underweight, etc. and at the risk of sounding harsh, how does your doc think you're going to improve to the point of being stronger & better-able to handle testing if the problem that's keeping you from eating well enough isn't being addressed? i'm not trying to bother YOU; it's just that i'm a bit annoyed with your doctor perhaps ...i've seen too many people be left by the wayside by GI docs who aren't proactive enough. but anyway.....

let me/ us know how you're managing if/ when you have a chance. GI-wise i have severe/ total gastroparesis & chronic intestinal pseudo-obstruction - amongst other things - so can relate entirely to not being able to eat or drink no matter how much you might theoretically want to otherwise. that said, i did notice you mentioning tea. since you're having trouble with weight loss (& thus with getting enough calories in) it would be a much better idea to make sure that any & all beverages you drink are full of calories (rather than almost calorie-free as tea is); since you prefer things that are hot things such as hot chocolate, tea or coffee with sugar and full strength milk or cream, or any other drinks that are more full of calories would be great. of course i know that it is sometimes harder to tolerate as much when the drink is richer/ heavier so it's then a bit of a balancing act; try for at least some calories but not too many to keep you from managing as much as you otherwise would.

hope you're hanging in okay....

melissa

Hi Melissa,

Thank you so much for getting in touch. Eating is still a problem but I've been drinking these shakes from the health food store made with pea protein. Spiru-tein I think they are called.

My gastro guy is sweet and I have faith in him. He's doing some studies now (feces)etc, but never mentioned the gastric emptying test. I will however, mention it. He wants me after I see the endo on wed to have atest done where I swallow a camera capsule to look inside my stomach.

I have been drinking ensure, carnation instant breakfasts and yougurt. Eating some grains whenI get the chance and trying to put something in my mouth every hour. Although today, after eating a large meal last night (1/2 tuna sandwich, soup, cookies) I've been up since 3 with the most horrid runs. I did also have alot to eat during the day and didn't feel great. I've gone to the bathroom probably 20 times. Might be from the tuna salad. I'm drinking gatorade and eating pretzels. I'm so weak and it's causing heart palps and chest pains. I don't know what's going on.

I'm sorry about your condition and it was so nice to be concerned for me! I will definitely call the GI tomorrow.

Thanks again, Melissa.

Rene

Thanks Nina, for your wisdom! I just get scared when I get the chest pains and the burning down my arms, neck, back and head. I've had the full cardio workup but still, there's always that lingering voice in my head.

I will try to stay calmer and stop focusing so much on the numbers and stop using the cuff so much.

Rene

Thanks, Morgan,

I guess I'm just hoping one day to wake up and being normal again! I know, no such luck.

Rene

Thank you PoorBear for your words of encouragement. I hate the anxiety it's just awful. And I know that if I need to go out, then I can really feel my pulse racing and know in my head that my b/p is up. Just scary. It's all so new!

Rene

Hi Futurehope,

Yes, I know, I'm getting myself all in a tizzy. Maybe it's due to living alone. I would be more comfortable if someone were around. And I was dealing with fibro/cfs for almost 9 years and it seemed easy compared to POTS which yes, I am relatively new to. Only got my official diagnosis in Feb. The weird things is I can feel when my pressure is up. I guess because both of my parents had high b/p and died realatively young from heart disease that it scares the living daylights out of me.

And I am doing tons of research and calling varioud drs. I was on the phone the entire day yesterday just trying to find some answers. It's most frustrating to say the least. And yes it's so very hard doing this alone.

I do some meditation and relaxation cds and even have an anxiety workbook. I'm not a calm person to begin with and not having answers really freaks me out. Type A personality, what can I say?

I will try to remain calm. And I've only taken my b/p once today and have put the cuff away!

I thank you for trying to bring me back to reality.

Rene

Thank you, I'm trying to get in with a really good Endo who hopefully has his Ego in check, unlike the EP cardios!

Rene

Hi Ernie,

Thank you! It's just so frustrating!

Rene