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The effects of Dysautonomia/POTS and Menopause


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Hi Everyone;

I am new here and I am very glad to see that I am not the only one on earth that is afflicted with such a debilitating syndrome. I have 2 sisters, who are nurses, that tell me that it is all in my head. But, I found a cardiologist who diagnosed me with POTS and my regular physician who diagnosed me with Mitral Valve Prolapse Syndrome/Dysautonomia. My sisters tell me that the doctors don't know what they are talking about because they, as nurses, have never heard of these syndromes. Well, needless to say, I don't think I will look to my sisters for advise anymore. I am glad you are here for me to vent and get some great ideas to discuss with my doctor. I am greatful to have a doctor that is honest enough to tell me that I know more about this syndrome than he does but he is willing to help me.

Anyway, the issue I am trying to solve is POTS (dysautonomia) and menopause. I had a hysterectomy 2 1/2 years ago. I am 39. I am constantly fatigued, my heart rate is constantly high, not to mention anxiety attacks one right after the other. I am also agoraphobic. I have so many symptoms I don't know what is caused by what. I am planning to go to a pharmacist, with the direction of my gyn dr. to have my blood analyzed for a compounded supplement meant only for my needs. I am hoping this will help. I am currently taking Xanax to help me fall asleep. I am on a very low dose of estrogen. This is all that I am taking because my dr. doesn't want me to take beta-blockers because I have asthma.

I am hoping that some of you may have experienced POTS or dysautonomia with menopause. I heard that estrogen levels effect serotonin levels which effect anxiety. I can't tolerate SSRI's. Any good suggestions would be greatly appreciated!! Thanks for listening!! God bless all of you!! I know that we are all in the same boat and pray for our rescue!!! KathyP

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HI Kathy,

I'm glad you finally got a diagnosis from your doctors. This board is full of wonderful people and tons of info to help you through the ups and downs of this crazy illness. I have MVP too, and anxiety usually goes hand in hand with MVP. I am 36 and not in menopause, but I do not that hormone fluctations affect our POTS symptoms greatly. I assume you know the basics about drinking lots of fluids, sea salt, salty foods, electrolyte drinks like Gatorade, cutting down on simple carbs and sugars and using compression hose. Someone here may know a good alternate drug besides a beta blocker to get your heart rate down. I didn't realize you couldn't take them if you have asthma?

I find that a liquid calcium/magnesium supplement helps keep my heart rate on more of an even keel, most of the time. Sometimes it's a struggle to find the right combo of meds/foods/supplements to keep us in balance or at least to lessen our symptoms. There's a good section to read in the pinned topics area on the top of the main page of the discussion board called "Answers to Common Questions."

Don't give up and don't doubt yourself. I'm sure you'll find a lot of helpful info here as well as encouragement. :P

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Hi, Kathy. Welcome--glad you made it here, tho sorry you're struggling with these issues. Would your sisters consider doing some reading? They might look at the information/resources available on this web site and at ndrf.com. Otherwise, sheesh; I agree that you shouldn't ask them for advice anymore!

Do you have asthma all the time or only as an allergic reaction to something? Do you take anything for it? It doesn't sound like you take medication for it regularly. I wonder if your doctor didn't want to put you on beta blockers because shortness of breath can be a side effect. Let me share a quick story. I just started on beta blockers (Toprol XL) a couple months ago to control my constant tachycardia. The doc put me on 50 mg daily for a week and wanted me to go up to 100 mg daily after that. During the first week I was tired as my body struggled to get used to the new med. On day 6, I had a terrible asthma attack--tho it was like a cross between asthma and simple windedness that I struggled long and hard to recover from. I had walked quickly up a flight of steps to get to my seat at a theater... and that bit of exercise did me in.

Needless to say, I didn't go to 100 mg... I went DOWN instead to 25 mg daily. The good news is that I haven't had another incident of asthma or extreme windedness -- nothing other than run of the mill shortness of breath, which I suffered from anyway! And my tachycardia has slowed down and I'm more comfortable on the whole. Not symptom free, but better.

All that's to say, you might want to talk to your doctor again about the possibility of trying a low-dose beta blocker. (The 25 mg tabs are scored, so you can start with 12.5 mg and see how you do and whether you have increased asthma.) Beta blockers have been around a loooong time and they're considered one of the safest medications on the market. I'll imagine that others with asthma take them ... I'm not trying to push you into taking more drugs--it's just that it's the first line of defense against tachycardia and it might help you feel better--and more calm.

By the way, I take ambien to help me sleep and xanax occasionally to help with anxiety. I always cut these pills into bits so I take the lowest dose that will help achieve the desired effect.

best,

Merrill

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Guest tearose

Hi KathyP, glad to have you here!

Do you still have your ovaries? You don't just loose estrogen you loose androgens/ testosterone too when removing ovaries.

You may benefit from having that compounding pharmacy work with your doctor to make a testosterone and vitamin E cream for you to use three times a week. You need to see an endocrinologist who also specializes in menopause! The mother and daughter team of Lila and Margaret Nachtagall are in NY city and are excellent!

As for the nurse sisters...forgetaboutit! They may or may not be close to you, but you will only frustrate yourself trying to educate them. You are now among kindred spirit sisters and this is a nurturing, caring place to share these concerns. Really. When your relatives care to know, they will come to you and ask. Have printed literature ready to give them and offer to discuss it with them later after they read it. Keep your cool, keep your self esteem and keep moving on.

bests regards, tearose

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Hi Kathy and welcome,

I'm also post-surgical menopause and after several fialed attemps, I don't take any hormones of any kind, what I do get comes in from my food. I eat a lot of stuff like soy, lentils. etc that supply natural hormones and do much better on this than any of the 7 different hormones and combos of hormones I tried.

As to helping, I might suggest trying the natural stuff, water, compression stockings, salt, vitamins and minerals. Check out the what helps section for all sorts of helpful info. You might also like to know that most people do better on very low doses than high doses of medicine.

Best fo luck,

blackwolf

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Thanks Tearose;

I am taking all of the advice I can get here. And thank you for the kind words. I have a feeling I will be spending alot of time at this sight. Thanks to everyone for some really great advice.

KathyP

Hi KathyP, glad to have you here!

Do you still have your ovaries?  You don't just loose estrogen you loose androgens/ testosterone too when removing ovaries. 

You may benefit from having that compounding pharmacy work with your doctor to make a testosterone and vitamin E cream for you to use three times a week.  You need to see an endocrinologist who also specializes in menopause!  The mother and daughter team of Lila and Margaret Nachtagall are in NY city and are excellent!

As for the nurse sisters...forgetaboutit!  They may or may not be close to you, but you will only frustrate yourself trying to educate them.  You are now among kindred spirit sisters and this is a nurturing, caring place to share these concerns.  Really.  When your relatives care to know, they will come to you and ask.  Have printed literature ready to give them and offer to discuss it with them later after they read it.  Keep your cool, keep your self esteem and keep moving on.

bests regards,  tearose

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Belated welcome Kathy! There is wonderful advise here. I'll second the post earlier on magnesium. It helps my heart rythm more than any other med I tried. I take a product called natural calm (a magnesium powder you dissolve in water.) And it is wonderful for anxiety too.

Having gone through an undiagnosed chronic illness especially one like POTS that sends the body chemistry racing, it's really easy to develop panic attacks and eventually agoraphobia. Feel free to email me anytime, I'm an old pro on both counts!

Welcome to the boards.

EM

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Hi Kathy,

I am not in menopause but did have my POTS come on after having my daughter a little over a year ago, so my case is definitely hormone-related. I think that for many of us, hormones are the culprit in making us feel so awful, and also why we look "normal" on many of our medical tests. Hormone testing varies so much and there aren't even tests for all of the hormones.

Calcium channel blockers are an alternative to beta blockers. They don't cause an increase in the pulmonary artery pressure (which is why beta blockers are contraindicated for asthma patients). I would ask about these at least. Or maybe clonidine, which reduces adrenergic activity.

Also, I would try doing the supplements at a different time than any Rx drugs, just so you know which one is making you feel better/worse. It's just easier to monitor your response one thing at a time.

Good luck!

Amy

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Good suggestions above.

I am not yet in menopause, so I'll just chime in on the magnesium. It has been a godsend to me, bringing very fast and major improvement in my fatigue, mental outlook, anxiety, ability to think and more. However, different forms of magnesium are available and sometimes it takes a little trial and error to find the right one.

If you try the Natural Calm mentioned by Earth Mother and have intestinal trouble (it tore me up!), try the Standard Process brand of Magnesium Lactate - the lactate form did not give me any of the problems that I had from other forms. I also seem to do ok with the orotate form, but the results aren't as dramatic for me.

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THANK YOU to all of you with such great advise!! I am going to look into as much as I can. I do take a magnesium supplement, but in pill form and it just doesn't seem to be hitting the spot. I am getting a good feeling from it though, just feel I need more. I will look into the Natural Calm and the Standard Process.

I haven't talked with my doctor, yet, about the beta blockers. The calcium channel blockers are a question for him too. Right now my asthma is controled with Advair. I had 3 doctors tell me that beta blockers are out of the question right now. But I have heard that a very small dose might be OK.

Thanks again! I will be checking in again real soon.

KathyP

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  • 12 years later...
Hello Everyone:

I been been diagnosed with Potts for about 6 years now. I’m on Midodrine and propranolol, which have worked miracles but recently at 5:00am I woke feeling strange. Then I noticed my feet sweating. I sad up got dizzy, I then felt hot and I knew I was going to have an episode. As I sat there my heart started racing along with dizzy, dry mouth, sweetly feet and palm of my hands. I tried like I always do fight not to faint, which it’s getting so hard. After the episode I noticed our heat was blowing full blast but I never had heat intolerant before. My husband did turn the heat off but it was too late I kept getting the episodes but thank god they weren’t as strong. After the episodes, I was in bed for four days so week, fatigued, dry month, naused, heart pain, shortness of breath, foggy when thinking, and feeling like I was going to have more episode. Since, that episode I’m slowly getting back to myself. I have realized that I could be worsening because I never had a problem with heat and I love my summers outside, which now I’m worried because I’m not sure how my symptoms are going to react when summer hits. At night I’m up threw the night sometimes not feeling good feet sweeting just the bottom of my feet, dry mouth and others just waking up out of the blue and I have always been a sound sleeper. I wanted to ask though there are times that when I wake up not feel good that I feel like I’m not breathing like I know I am but I feel like I’m breathing too slow or not feeling like I’m breathing. Has anyone felt that with there symptoms? I usually feel like I’m not breathing after I had a bad episode or episodes and I’m so dehydrated, weak, and fatigued but I been waking up feeling that way and I feel like calling 911 because I know it not right to feel that way but I haven’t yet. Can anyone relate? If so what did you do to help ease the not breathing sensation. After the last episode as feel it seems like no matter how much water I drink my mouth is so dry like when you have an episode. Any ideas to stop it? Also since the last episode my body temperature has been out of control hot sweaty throughout the day to wear today I felt an episode starting. I mean what happens if I’m at a store. I can’t go striping of my clothes to prevent an episode.  Now to top it all off I found out the other day that I could be going into pre-menopause which really worries me because I have pots. It just seems like those two would not mix well. Plus, so out of breath. 1f62c.png😬1f62c.png😬1f62c.png😬 Any ideas?????
 
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My POTS hit while going through menopause.  My neuro says they see peaks in patients around puberty and menopause so it’s not unusual that your symptoms are worse now.  Have you spoken to your Drs about this?  Is your gynecologist familiar with POTS?  I was put on HRT which has helped with night sweats and insomnia and possibly a little bit with POTS symptoms.  I definitely had the hot flashes which are miserable but I believe HRT helps them too.  Menopause and POTS aren’t fun but getting to knowledgeable Drs is key.  I have never had the breathing issues so don’t know anything about that.  Dress in layers, moisture wicking pajamas and tops and other menopause specific items should help somewhat.  Hang in there.

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I have had POTS since my early 40's and am currently going through menopause. The hot-flashes and nightsweats related to menopause have definitely made my POTS worse. My dysautonomia specialist told me that this is because hot flashes cause a drop in BP which causes autonomic instability. I can't have HRT due to hypertension from POTS but I take a herbal hormone balancer called chaste tree supplement - it has been so helpful with the symptoms of menopause that it also improved the POTS ( only due to the decrease in hot flashes ).

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I run water over my wrists and cold gel pack on my neck then drink a glass  of cold water when I get hot as it usually sets off an episode if I don't , 

I had full hysterectomy and was on hrt which did help with hot flushes a bit ,however had to stop due to breast  tissue changes as I am estrogen dominant 

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  • 1 year later...

Please help! I was diagnosed with pots 5 years after symptoms started. Started in 2007. I was able to deal with the symptoms and had a few good years after the Dr started me on Xanax because he thought I had anxiety but it helped with dizziness. I'm now getting ready to turn 44. I've had blood work show I'm in menopause. My issues have always been dizziness and nausea. Heart rate doesn't always jump so high but lately I've been bedridden 3 times in the last few months. Absolutely miserable and scared. I'm so dizzy in all positions, I can't even go to the bathroom without feeling so horrible, no showers, can't do any simple task. Legs hurt when I would stand for over a minute but right now I can't do that. I get hot and sweaty out of nowhere then I'm cold. I know I'm leaving out allot as my memory and thoughts are not great. I'm having a hard time with Drs and frankly I can't get up to go see one. I take salt sticks for dysautomia, drink 3 liters of water and eat mostly protein as I'm sensitive to most food, meds and I can't do electrolyte mixes that Drs recommend. Not Gatorade or anything. Everything makes me feel sick. Did I get worse because of menopause? Someone please please help me. I just try and sleep. I woke up with an episode this morning and have had anxiety. I definitely don't want to continue to live like this. It's not living. Thank you for any help!

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My doctor started me on a homeopathic estrogen cream derived from African yams. I didn't think it would work, but it did. She warned me not to order stuff off the internet because you can't control purity and dosing. It is compounded for me based on my bloodwork and weight. The next step was I started 10 mg of melatonin that I got at my local big box store. It doesn't help me sleep but seems to have calmed down some of the other stuff. I went through a ton of doctors before I found someone willing to work through this issue. My cream is a prescription. To get to this point I spent about 8 years like you. I finally just started calling OB/GYNs and telling them I had and autonomic nervous system disorder with adrenal involvement and menopause and was looking for a doctor that would handle the hormone side of my illness. Most doctors seem to only want to deal with women during childbearing years, then we aren't important. I finally found one. I drive an hour and a half each way to see her, but am happy to do it. She changed my life. 

When you say you are having trouble with foods, do you mean allergy or gastric? 

Have you been able to get to a university hospital to get a full work up? 

This could be your dysautonomia on unwelcome new hormones. If your sheets, pillows, pjs are soaking wet, you are sleeping maybe 30 minutes at a time and you are borderline tears from exhaustion yet feel like a nervous wreck and can't remember what you are reading or watching on tv, while feeling drunk...  you get the picture.

You might want to find an OB/GYN who wants to work with menopause. 

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@Angela crouch - I developed POTS at 42 and got a lot worse during menopause at 50.  My two older sisters, who also have POTS, DEVELOPED POTS during menopause. The hormonal changes seem to affect the ANS. My autonomic specialist had mentioned to me the possibility of it worsening with menopause and he also mentioned that hot flashes lower BP and therefore could trigger unwanted autonomic symptoms.  

3 hours ago, KiminOrlando said:

You might want to find an OB/GYN who wants to work with menopause. 

I agree. I was lucky in that my OB/GYN, that had been my physician for year,s was willing to educate herself about POTS and worked with my PCP and specialist.  She did not want me to take Hormone replacements due to the effect on the ANS ( although they were cleared by my specialist ).  I did have to increase and alter my meds and that helped a lot with POTS.  There are many natural supplements that are effective for menopause ( personally I took chaste tree ). 

You might want to either check with your gynecologist or see someone who is open to treating your unique symptoms. Often a physician in a university setting is more open to treat challenging patients. Also - do you have an autonomic specialist? If so he/she may be able to recommend someone. If you do not have one it might be helpful to see one at this point. You could refer to our physician chart. 

6 hours ago, Angela crouch said:

I'm having a hard time with Drs and frankly I can't get up to go see one.

Do you have a family member or friend who could help you with finding and going to a doctor?  I understand how difficult it can be to leave the house when you are this bad but at this point it appears that you are not able to improve with the usual remedies.  Best wishes!!!!!!

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6 hours ago, Pistol said:

@Angela crouch - I developed POTS at 42 and got a lot worse during menopause at 50.  My two older sisters, who also have POTS, DEVELOPED POTS during menopause. The hormonal changes seem to affect the ANS. My autonomic specialist had mentioned to me the possibility of it worsening with menopause and he also mentioned that hot flashes lower BP and therefore could trigger unwanted autonomic symptoms.  

I agree. I was lucky in that my OB/GYN, that had been my physician for year,s was willing to educate herself about POTS and worked with my PCP and specialist.  She did not want me to take Hormone replacements due to the effect on the ANS ( although they were cleared by my specialist ).  I did have to increase and alter my meds and that helped a lot with POTS.  There are many natural supplements that are effective for menopause ( personally I took chaste tree ). 

You might want to either check with your gynecologist or see someone who is open to treating your unique symptoms. Often a physician in a university setting is more open to treat challenging patients. Also - do you have an autonomic specialist? If so he/she may be able to recommend someone. If you do not have one it might be helpful to see one at this point. You could refer to our physician chart. 

Do you have a family member or friend who could help you with finding and going to a doctor?  I understand how difficult it can be to leave the house when you are this bad but at this point it appears that you are not able to improve with the usual remedies.  Best wishes!!!!!!

I have been unable to find a Dr that seems to know much and since I don't have health insurance no Dr wants to see me. All I do is sleep but can't get up to do anything. I do feel hormones have made me worse. I'm not sure what to try anymore. I have hrt creams but they seem to make it worse if that's possible. Thank you for your response! 

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So sorry you are going through this.  I am 51 and definitely in menopause now.  I am not sure what the next few years are going to be like for me due to this.  Two weeks ago I got a sinus infection and it put me into a downward spiral with POTS and also insomnia that I cannot believe would not also be related to menopause b/c normally I weather infections better than this.  Anyway one of the things that helps me most is IV fluids 2-3 times a week, when I am having symptoms.  My GP is so helpful and understanding about this, and prescribes them for me at the drop of a hat when I am feeling at all badly.  I have learned from going to the infusion center that they are serving a lot of POTS patients there on a regular basis.  It seems doctors have come to realize how useful this is.  

I agree w Pistol that it is important to be seen by a doctor knowledgeable about this condition and open to helping you try a variety of treatments until you find what is going to work for you.  Most of us get better with proper treatment.  

Hope that you find some answers and feel better soon.

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