Age At Diagnosis

[lgtaylor100]

I am a sixty two year old woman who was diagnosed with POTS last month at Jefferson University in Philadelphia. I notice that most of the other members are much younger. Are there other members who are close to my age. What has been the experience for others in this age group.

I suffer from horrible fatigue in addition to postural tachycardia. I am currently taking atenolol which is helping with the tachycardia but i believe the fatigue is worse. I have also recently been diagnosed with cervical stenosis.

[potsgirl]

Hello,

I am just about to turn 49, and I know there are several people on the Forum who are in their 50s and 60s. I personally know one person who is 52 and has had POTS for approximately 20 years. She goes through good and bad periods, but still has it, along with CFS and a variety of of problems, like most of us suffer from. Another friend is in her 50s and has had POTS for the last couple of years. I was diagnosed at the age of 46, and for the last year and a half couldn't work. I really miss it, but you end up learning to live your life among your limitations, and it can still be good!

Are you able to go out? What's your daily schedule like? I'm just interested because mine is really weird. Up at 5:30 am, nap from 2-3, and back to bed at 5:30 to read until 7:30 (if I'm lucky) then SLEEP.

Hang in there. You're never alone on this Forum.

Cheers,

Jana

[lgtaylor100]

Hi Jana-

I stopped working in September when my symptoms became disabling. I had worked as licensed counselor for which i trained in my fifties so it was particularly difficult to leave this career.

I envy that you can nap in the daytime, Even though I am exhausted I can't sleep until about 11 at night. I am a poor sleeper and wake up several times at night.

I wake up at about 6:30 and do very little all day due to exhaustion and muscle weakness. This has been really horrible for me. I don't know how to get back to living a somewhat productive life. I particularly miss spending time with my grandchildren. I see them but much less frequently than before. I was perfectly healthy a year ago and have not been able to identify the cause for the POTS.

Thanks for your reply,

lynne

[potsgirl]

Lynne,

What part of Iowa are you from?

J

[lgtaylor100]

J-

I'm from Pennsylvania, not Iowa

Lynne

[potsgirl]

sorry, got my messages mixed up somehow!

[toddm1960]

Diagnosed at 48, currently 50

[zaks27]

Hi Lynne!

Yep, I'm close in age to you--58, diagnosed last summer at 57. Hmmm--I also have severe cervical stenosis. I'm seeing a neurosurgeon on the 28th. In physical therapy now. My POTS symptoms are pre-syncope, dizziness, tachycardia and exhaustion. Problem is I also deal with fibromyalgia, and rheumatoid arthritis along with the POTS and spine problems. Talk about over lap of symptoms! I just had MRIs taken a few weeks ago, and they found stenosis in the thoracic spine also--at the level where the nerves to the heart may be involved. I'm questioning whether this may be the cause of the tachycardia? Seems I started with severe mid scapular pain soon after the initial diagnosis of the POTS (TiltTT). I'm taking midodrine 10mg every 3 hours and using 40mm support stockings. Couldn't tolerate beta blockers (my BP went WAY too low), and Florinef didn't do anything but make me hungry. I totally understand about the grandchildren. I hardly get off the sofa anymore, let alone see the babies. HBO and Oprah have become my best friends, along with the games on Facebook! Best wishes to you, Susan

[lgtaylor100]

Hi Susan =

Good to hear from you. I also have fibromyalgia and possibly Sjogren's syndrome. The labs keep coming up negative yet I have all of the symptoms.

Is the physical therapy helping the cervical stenosis? I also have an appointment with a neurosurgeon in a few weeks.

I have not been prescribed Midrodine because my blood pressure is not low, but my heart rate is high upon standing. I was diagnosed with a TTT; heart rate immediately went from 70 to 100 and increased to 130 during the test.

Thanks for replying,

Lynne

[icesktr189]

I was 18 when I had my TTT and got my diagnosis. But I have had symptoms since I was around 6. Of course they were way less severe and disabling. Thankfully i was able to graduate highschool before all this happened.

Right now I have constant pre syncope symptoms, brain fog, dizziness/vertigo and EXTREME fatigue. I sleep around 16 hours a day. I really try not to but i just cant find the energy to get up :/

[sue1234]

My symptoms started when I was 46, and I was "officially" diagnosied last year. I am now 51. Double hmmmmm...I have diagnosed cervical stenosis also. I also have scoliosis that I am sure is progressing over the years.

I am always like fatigued, yet hyper-alert all the time. I don't care if I only slept 2 hours at night, I never can sleep in the daytime. I take Xanax to fall asleep at night.

[mwise]

Welcome to the best forum group that helps keep me sane. LOL I was diagnosised at age 55 in December 2010, but feel have had symptoms since 2005 after I had my gall bladder out wasn't ever the same again. Everyone here has soooo much to give whether it be education, support and most of all love. I have learned so much about my symptoms and illness, what works and don't work, received a lot of support and most of all the heart felt love from the forum members.

Kuddos to all the forum members.

We have all felt like you have and still do on-going. When I was first diagnosed, I was couch, chair & bed bound. I would crawl to the bathroom because when I would stand my pressure would drop to where I would be ready to pass out or pass out. I would be in the bowels of dispair because I pretty much couldn't walk or do anything I used to do including working as a nurse. It was a lot of prayers, guidance and support from the forum, family, close friends and good doctors that listened, were empathic and tried different medications (now on Mestinon and Midodrine) that got me to be able to walk again and have some normalcy in my life. I set little goals whether I am having a good or bad day and make every attempt to accomplish them each day. I am even back to work once again.

Igail-Know we are all here for you and a great big welcom hug to you.

[zaks27]

Lynne,

I just began with the PT last Thursday. Basically he did stretching exercises on my neck and used the TENS machine to try and relax a few muscles. I'll be going twice a week until my neurosurgeon appt. on the 28th. I figured the NS will have me do this anyway--so why not start now. I had a bit of pain relief (like a hour--maybe). I also tried massage therapy X 2--which was horrible. Terribly painful for days afterwards. I'll probably also make an appt. to have trigger point injections before my appt. I figure the NS will try facet injections before surgery--but that's just my assumption. I've also had an epidural with cortisone injection without pain relief. BTW-I have Sjohgrens also. I take Evoxac 3X/day to give me a bit of spit. I also take Doxepin for sleep, IBS. restless legs (and I guess depression is in there somewhere too!) I take 50mg at bedtime. I think it's really helped. I'm up about 3 nights a week rather than 7. If I sleep well, I'm in bed for 10-11 hours. Bed/sofa/eat. Whatta life huh? Welcome--we'll have to swap stories about our NS visits! Susan

[stacdliw]

I'm 58 now and received my official diagnosis of dysautonomia and POTS and Vandy last year at 57. I, too, suffer from debilitating fatigue from CFS, fibromyalgia, hypersomnia, migraines, and gastroparesis. I know how you feel, there are many days that all I can do is just lay in bed and even that is exhausting!

[Noreen]

Diagnosed in 2002 at age 43. Fibro since 1990, RA since 1998, and the dx list kept growing. Generally fms was attributed to auto accident but I had my gall bladder out 9 months prior to that and I think it may have started then. The ncs symptoms I have had forever.

[futurehope]

Hi!

I'm 59 years old, diagnosed at 51.

[Kyler]

My son was 12 when he was diagnosed with POTS and when he started his first beta blocker (acebutolol) I thought that he was going to die - it made him SO much sicker - he had headaches, obscene BP of 160/112, extreme fatigue - we tried it for 2 weeks and then switched to metoprolol (it was like night and day) which worked well for a year and then quit working so now he takes betaxolol. his doctor explained that each BB has different "specialties" such as rate control or BP control and different side affects so don't be afraid to play with the dose or ask to switch to another one. If you have a good POTS doctor then they should work with you to find the right one. When they put kyler on mestinon we ended up in the ER because his HR dropped WAY low and he was having muscle spasms. The only way to figure out if it's the med or a change in condition is by trial and error. Good luck.

Serena

[MomtoGiuliana]

Now 42, diagnosed at age 34, but symptomatic starting in late 20's, maybe even earlier.

[jekecana]

Both of my youngest sons have been diagnosed "dysfunction of the autonomic nervous system". My now 5yr old was dx at 19months and had a pacemaker implanted, although his symptoms & fainting began at 4months old. He faints & his heart pauses (for 7 + seconds at a time)and has a constantly fluctuating heart rate although with GI issues & asthma. My now 2½ yr old was diagnosed this winter, symptoms started this summer. He has worse GI issues, asthma, constantly fluctuating heartrate, wildly swinging blood pressure-from very high (157/109) to low (70's/40's). At this point his heart rate doesn't pause for more than a second or two so he is not what they are considering "in dangerous level" YET. He's also recently started having bouts of tachycardia which my 5yr old never had..

[runningshoe]

dx at 42 now 46. dx with Lyme last year and still being treated for that...hope that might turn things around.

[leea190]

I was 19 but I was having episodes since I was 16.

[MightyMouse]

symptomatic since birth, major exacerbation of symptoms at age 10 diagnosed at age 32