ANYONE over 50 years of age??????????

[kare]

I was reading past posts and noticed that Karyn (who is a neurologist, glad you are here with your medical insights but sorry you are sick...) commented that a Dr. told her that POTS would get better when you reach the age of 50 because of natural hardening of the blood vessels...... I have had POTS since 2nd pregnancy 18 years ago and am now 46....I am wondering if Life will improve in a few years..... Got soooooo excited this AM reading that....... if not many peoplerespond that are older that will be a good sign--- means they have out grown the need for support because they are better????

My main complaint is of course, the relentless exhaustion, day after day after day......

[morgan617]

Sorry to burst your bubble. I am 50 and am getting worse. Of course that may just be me. We did have an earlier thread about this and why it made sense, artery hardening, less ability for the blood to pool etc. But a great deal of the people on here are are in their late 40's. Or 50's like me. I have been sick my whole life, but didn't really get diagnosed until a few years ago. I just think some people get better, and some stay the same and some get worse. Some are mild and some are terrible. I'm not really sure it's age related at all. again, sorry, morgan

[Ernie]

Hi,

There are many people with POTS and NCS in my family and it seems that we crash around 40 years old. The younger ones can manage a reasonably normal life but 4 of us are disabled due to this illness. I am not aware that in my family we get better as we age. It is more the oppposite.

Ernie

[Roselover]

I'm mid 40's and have wondered the same thing. The other thing two different doctors have told me is not to worry, because most people find that their symptoms just fade away in a couple of years. Well, I'm on year 3 and not fading! This doesn't seem the case with most people either.

I believe my mother has POTS and other things -but she refuses to get tested. Early on she decided she had MS, but no evidence of this has been found. Her's began to get severe in her early 40's and that's when mine did too.

Anyone experienced an increase or decrease of symptoms with Menopause????

I've been wondering about this too.

~Roselover

[futurehope]

I'm 53 years old and I really went downhill after menopause 3 years ago. I believe I had a milder case (undiagnosed) for years, so mild in fact, that my life was relatively normal, then wham! menopause. But I have to say that in reality I have NO idea why I got worse 3 years ago.

[MightyMouse]

40.5 and told by Dr. Grubb to expect to get worse from menopause onward.... Nina

[MightyMouse]

Do, keep in mind though that those who've gotten better are unlikely to be hanging out here--our group is biased in that most of us are folks who are actively ill (or family / friends).

Nina

[dawn]

Hi,

Almost 50, in January. This past year has been the worst. Had to quit work.

Do notice the tachycardia and syncope are better. I now have episodes of bradycardia in the 40's which I think makes me feel worse. I have more fatigue, headaches, nausea, slow digestive emptying, hot flashes, general flu like feeling, muscle aches, shortness of breath, depression than I have ever had.

Sorry to be so gloomy. It's been a horrible year heathwise.

Dawn

[corina]

My last neuro told me at first he didn't know of any patients older than 50, than 55, than 60. So I told him: let's get 60 (and soon please). When he told me I needn't come to the hospital anymore because he didn't see any possibilities left to help me, I suddenly knew why he didn't know any POTSpeople older that 60. He just sends them home

Besides that I believe I was his only POTSpatient.

Btw, I'm 41 and started menopause on 34 (diagnosed through bloodtests).

Question to Karyn and Karen: should I really hurry to get 60???

Corina

[michiganjan]

I am 57, soon to be 58. My POTS has graually worsened with age. I think my younger self had a better ability to adjust than my older self. My stamina and length of time on my feet is definitely less than before and that is in spite of maintaining a good diet, steady healthy weight and regular exercise program and weight training program for many years.

Sorry to say, but my "standing time" without bad symptoms has been dropping as my age increases.

Michigan Jan

[kare]

I called an old friend that has had similiar symptoms for years(I hadn't talked to her in a long time she has the high pulse/MVP diagnosis, trouble sleeping, exhaustion and she said ..... Yes, her symptoms HAVE been better last few years. She is 57 now and said that there has been a definite decrease in her symptoms(and more energy and less brain fog). She said she can't remember the last time she woke up exhausted and that made me feel good because mornings are soooo hard. I quess since there are different things that cause our autonomic problems, then different people will get better with estrogen out of system, or blood vessels less floppy or....

I have had so many many exhausted years, I am so hoping that things will improve........ maybe, maybe...... I quess we all just have to keep hoping for our "miracle" ... but meantime enjoy life as much as we can in the" tired" lane.....

[Karen]

I started feeling sick 14 years ago at the age of 38. I will be 52 this year. Overall, I have improved from the devasting way that I felt a good part of these years. I still have the fatigue, still have to lie down during the day, still get dizziness. But it is all less, especially the dizziness. OI is still a problem, but a little better. Exercise has helped me over anything else, and before I couldn't walk half a block without keeling over or my heart racing. Of course meds are helping in that regard too.

Overall, better, but still not normal by any sense of the word. I am officially menopausal, and have really felt no difference with my symptoms.

karen

[kare]

Karen,

do you mind me asking what meds help you and how did your dys start?

thanks

[geneva]

I am 51 and came down with POTS when I was in perimenopause and once I crossed through those years, I began to feel better. Not normal, just better. Is the timing of onset of POTS and menopause coincidence or not in my case, I don't know. I do know I can see marginal improvement, year over year for the last 5 years but still consider myself POTS-normal.

[Miriam Poorman-Knox]

I had early menopause in my early 30's. A hysterectomy in early 40's. I will be 50 Sept 28, and not a day before!!!

Last year I was in ICU for Acute Respiratory Distress Syndrome--NOT associates w/pots. Was on life support 3 weeks, dont remember much except that every survivoris a miracle and you start your birthdays over if you make 1year and I will June10!!!! So either my husband and my relationship is sick AND I AM too young to have a 4 y.o. grandson,or I can deduct 1 per year!!!! See how creative we can be!!!

Also it has alot to do with what you main problems are, each is different. The most important and most difficult is activity to keep the blood pumping.

Miriam

[MomtoGiuliana]

Like everything else about POTS, I suspect this varies from person to person. I have also wondered about this, though. In my case, hormones definitely play a role, as I was the sickest I have ever been during mid-late prengnacy and even worse post partum.

As far as hardening of the arteries improving things--I wonder if this is mostly the case for EDS patients?

The prevaling opinion in the medical community does seem to be that POTS fades away over time--the average length of time for recovery being 4 years. My specialist says that this is generally true, however, some people do stay sick much longer and even people who seem to get really well again, can have relapses--surgery or stopping medications or other things can trigger getting worse again (he told me). He also told me that I can expect to feel worse when I go through menopause--that that is typical. I didn't ask him about AFTER menopause! I will definitely ask him about his experience with this at my next appointment.

Katherine

[Karen]

Hi, Kare. You asked what meds I am taking and they are Lexapro and Toprol. Another prescription would be getting to bed early and doing some exercise, which I have been doing for 2 years now and what I find to be the most significant to my improved condition. (through Heart Enhancement Program at local hospital)

Karen

[tunnie]

Hi, I am new to this site...and to POTS. I am 51 and was diagnosed five months ago. Symptoms started with menopause changes and have continued to get worse with symptoms every day....near syncope about 4x/month. One of Dr Grub's articles says that menopause def makes a difference. Has anyone been recommended to take estrogen to ease symptoms?

[morgan617]

I am on hormones for osteopenia and started them before menopause, and had a hyst at 31. So don't know if I'm menopausal or not. I would have to stop them and see if I'm symptomatic. They don't make a difference in how I feel however. morgan

[Eli6596]

Hi Karen,

Thanks for revisiting this question. Very interesting. I will write more later. I am about half asleep.

Karyn

[Eli6596]

I would like to think there could be some improvement with aging. Anytime I get my hopes up too high for improvement, and it does not happen, I am wiped out emotionally and physically. I try to keep my window of hope cracked but not wide open. I cannot even allow myself to think of worsening. I would go into a hole. All I ever pray for anymore in church is for health for me and my loved ones. I used to pray to do well on a test. I look back and think how naive and innocent to the world I used to be.

I have met two people who got better with age. Neither one of them were ever formally diagnosed with POTS, but both had classic symptoms. I will hope for the best but not be surprised if that does not happen. I will TRY to live in the present.

Thanks to everyone for sharing your experiences.

Karyn

[morgan617]

Karyn, Never give up on hope, sometimes that's all we have. I am sure people have gotten well after developing this awful thing, but as has been said before, they have much better things to do than lurk here! There is always hope that something will trigger a remission just as something triggered the disorder. You are so right, we take so much for granted til we don't have it any more. I never realized how important driving was to me, til I had to quit. I don't really pray for myself anymore, but I do pray for all you young things out there with a full life ahead of you. For those with small children. For those with spouses that just don't get it, or don't want to. And I do believe someone is out there now waiting for that epiphany to hit and figure out how to help.

By the way, how were your seminars? Did you get through them all right? Thought about you last week, cause they can be exhausting....morgan

[corina]

Thanks for bringing up this topic. My former neurologist gave me the idea that I'd better hurry and get 60, meaning that it would all be better around that age. And I thought, okay 60, you can do a lot of things when you're 60!!! But now I don't want that anymore, I'm not going to waste 20 years of my life and then hope I'll be cured at 60! I'm going to enjoy my life NOW, no matter how difficult that is at times. I don't give up hope, but I won't waste my days with hoping to be cured in 20 years. There's always something left to enjoy, even if you're very limited!

Oh and btw my 10 year old son is going to be a doctor and he'll cure us all, he promised me

Corina

[Eli6596]

Hi again,

Corina, I send a great big hug to your son. My 9 year old daughter made me smile this weekend. She told me that if she could only have one wish, it would be for my health problem and her daddy's health problem (diabetes) to have never happened, and for she and her brother to always have good health! Also, when someone shook their head at me last year when I used a handicapped parking spot, she told me "He should not judge a book by its cover". I know we all worry about how this illness is affecting our children. They miss out on activities with us, but they are learning what a chronic illness really means. It is teaching them compassion. A book cannot teach them that. Some people NEVER learn that. Are kids are compassion advanced!

Morgan, it took me awhile to recover from traveling to Miami for the Neurology conference. I used a motorized scooter the whole time which helped a lot. I spread the word about POTS to a lot of people while I was there. I wrote about it in some of the posts last week. Let me know if you did not catch those posts. I can talk about it again. If I had not been on a scooter, no-one would have had a clue that anything was wrong with me, even if I had been sitting on the floor or lying on the benches in the hallways. The scooter actually was the introduction into many POTS mini education lectures that I gave to my colleagues!

I try REALLY hard to live my life in the present, not mourning the lost past, or scared of the future.

Karyn

[morgan617]

Sorry Karyn, I had kind of a rough weekend and must have missed stuff. Glad it went well and really glad you got the word out! I'm thinking about a cane or scooter, I can't even go to the store anymore. Kids are so great aren't they?! Your kids sound wonderful. I was worried about you, because I know those things can be noisy and too stimulating and not conducive to our an system. Glad you got through okay. We missed you on the board! morgan