Jump to content

Recommended Posts

I must have had vague POTS symptoms when ME started in 1984 and seven years ago when I was 46 the worst of the symptoms came on over a period of a couple of weeks which hospitalised me. I am now 53 and have no sign of them going and like barb10 have underlying EDS symptoms.

I was also under the impression if you had it when you are young you may 'grow out it' and the later you have it the less chance of this happening. This has also been said about ME.

Link to post
Share on other sites

This is interesting because my EP did tell me that my POTS may go away once I hit menopause. Even it if that's true, that's at least 10-15 years away. :mellow: I don't know if I believe him, but since POTS seems to react so strongly to hormonal changes, I can see symptoms getting better, maybe. I've had POTS for 2 years now, and I had one day of almost 100% normalcy back in April - it was the day before my period started. But I do think it depends on what caused the POTS to begin with. Mine seemed to start during a period of prolonged stress and anxiety, though I do think I have IBS and have borderline SFN.

Vemee, I also experienced my first bout with anaphylaxis this past February. I had taken two aspirin and a dozen sprays of nasal saline (maybe too much?) to help out a bad cold, but ended up in the ER about a half hour later. Since then I've taken an aspirin challenge test and I had no problems at all. The allergist didn't think it was the saline. It's very strange, it's like our bodies randomly go into a defense mode and see perceive a something helpful as something toxic. Since POTS, I've added at least 4-5 things onto my health record's allergy list.

Link to post
Share on other sites

Hi a eris,

interesting that you did an aspirin challenge test and was found to not be the cause of your anaphylactoid response. Did u have it done in hospital? I did a test some years ago to see if I was fine with celebrex -- a nsaidl, albeit one that is least likely to cause problems, and found i was okay with that, only problem is it doesn't seem to be much use to me for pain. I am thinking asking my allergist for a challenge test for aspirin, although it is salicylic acid and I am intolerant (although not allergic) to foods with more than a low level of salicylates in them.

I have erthythromelalgia and aspirin can be helpful for some people with this skin/nerve problem (a substantial amount get the result of resolving flares of EM with aspirin and I would so like the chance to be one of them. My erythromelalgia (EM) did not show up until I had an anaphlactoid response to aspirin (it was an educated guess by doctors that aspirin was the cause). I often wonder if, because I was taking aspirin quite regularly for migraine, (and combined with codeine it was just as effective as the opiates I now have to take) I may have been treating the Erythromelalgia that I had not yet realized I had.

was your aspirin challenge test done in hopspital with a cannula inserted waiting to be hooked up to rescue medication should allergic response recurring?

Blue

Link to post
Share on other sites
  • 4 years later...

This is an old topic but maybe there's someone with some hope since it was started. Not sure it's a thing though.

I'm 65 and still have it. It waxed and waned for many years before I was diagnosed at which time it really jumped in the there with a vengence and let itself be known. But I don't know how long I had it before because I have had a lot of problems and I blow off things and try to live my life the best I can by ignoring symptoms as much as possible. I was late 50s at the time of diagnosis but no one told me I couldn't have it because I was too old. It was more like, of course, you've got POTS too, now what's next.

Link to post
Share on other sites

I was diagnosed last year at age 56, so I guess that rules me out.  A friend recently told me her Mom was diagnosed with it 20+ years ago in her 60s; she is now in her 80s and still taking the same beta blocker as when she was first diagnosed.  

Link to post
Share on other sites

There is no evidence that POTS or other dysautonomia disorders resolve because of age.  And it is absolutely possible to develop POTS and other dysautonomia disorders at any age, even though POTS is more common with women during the "child-bearing" years.  That being said, as DINET has been hearing from many women over the age of 50 who are newly diagnosed or in the process of being diagnosed, we have begun questioning whether the diagnosis is being complicated by age and whether the number of women with these disorders is under-reported. 

DINET conducted an informal survey of our members and Facebook followers who are living with different forms of dysautonomia.  The survey was about diagnosis and treatment in postmenopausal women.  Based on that survey, we are moving to the next step with an analysis of a questionnaire that we did over some months in 2018.  We hope to explore the topic for the purpose of answering some important questions - Should treatment change as women age?  How do patients and doctors track symptoms of dysautonomia vs the normal aging process?  For example, with normal aging, some people develop some memory deficits,  vascular issues, GI changes, etc.  Will other illnesses be missed because all symptoms will be "blamed" on dysautonomia?  And conversely, will dysautonomia be missed in older women because the symptoms will be attributed to older age?  There are many other questions that we hope to answer over time.  In the meantime, you can view the results of the 1st survey of members at this link.  I believe the answers are very interesting. You can find the pdf with the results of the survey at this link: 

 

Link to post
Share on other sites

Mine started at 56...I should get a time machine. 

Link to post
Share on other sites
  • 4 months later...

I am 49 years old.  My niece ( on my husband's side so not a blood relative) was recently diagnosed with POTS.  When I read through all the symptoms, I thought, that sounds exactly like what I have struggled with since my early teens.  My family called it "Cathy-itis" and my friends called it the "Cathy Green" syndrome." Excessive fatigue, irregular heartbeat were the main symptoms in my teens.  Cardiologist I saw said it was "all in my head." Turned me off from even mentioning my symptoms to a doctor.  I was also diagnosed with anemia at 17 and have had to take iron my whole life to keep my numbers in the normal range but it has been a struggle.  In my 20s, I could not deny my serious digestive issues, chronic constipation.  I had 4 children in my 20s and I was exhausted beyond words all lot of days, so I would mention my extreme fatigue to doctors and nurses and they would just tell me "who wouldn't be tired with 4 kids."  I actually had 4 more children in my 30's and early 40s. So the "no wonder you are tired" comments continued every time I brought up exhaustion.   But I didn't always feel that exhausted so it didn't make sense.  I was diagnosed with hypertension when I was 31 and prescribed a beta blocker and my symptoms eased significantly.  I would have what I would call "episodes of extreme fatigue, dizziness, nausea and decreased then increased blood pressure, but would push through the days and wonder how did people function if this is "normal." I would beat myself up inside because I wanted to get up and do things with my kids but I just had no energy.  Thankfully, the "episodes" came less often.  But the nausea got worse.  Started heartburn meds that helped but now can relieve the nausea for the most part with taking apple cider vinegar regularly.  Weirdly, with the episodes where I would sleep all day, I found eating salty things or literally dipping my finger in salt and eating it straight would help with the dizzy, nauseous and exhausted feeling.  Migraine started when I was 41/42.  My "episodes" come way less often.  But my chronic constipation is getting worse.  Gastro says take miralax and comments that my stomach is the quietest he has ever heard.  For years, I have told my husband I just feel like my digestive system just STOPS working.  Dr. says not to rely on laxatives and magnesium citrate...which I know isn't good but better than the pain associated with not having a bowel movement for a week.  Not sure if I should even try to go to a doctor and see if I would test for an official diagnosis..who would one see for that?... but my question is for those who suffer with constipation, what do you do?   Thanks for letting me share this...

Also wanted to note that many times when I am having"episodes" that people recommend exercise but during those times, exercise made me feel worse.  And I have to wear  compression stockings most nights and especially when traveling because of swelling in my ankles.  I bought a wedged foam pillow to keep my legs elevated at night.

Edited by Kathi
Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...