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lieze

A Dysautonomia Success Story?

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I met this woman at work.

I heard her talking in the bathroom stall next to me with people we were both helping.

I heard her saying she worked at the local hospital and I told her I had looked online there at the job opportunities.

We ended up talking and here she has POTS.

She had just been to a neurologist and passed a tilt table.

He told her that he could send her on to Cleveland for further testing but didn't really see a need at this point.

She is probably in her 50's? And is tired from her 12 hour shifts and shift work where she sometimes works nights and other times days.

Well she happened to call me today-we exchanged phone numbers.

Here she was diagnosed in nursing school 35 yrs ago when they were looking at their pupils and hers were different sizes.

She went onto a neurologist who did an EEG and a brain scan and diagnosed her with dysautonomia and told her just to be careful in the heat and when exercising because she doesn't sweat.

She says the thing she thinks kept her going all these years was she always ran and then when she stopped running she started walking. She says that is what she thinks kept her healthy until she got a virus and then experienced an increase in her symptoms.

She did say that she has avoided doctor's in the past and is planning too for now just because she was doing okay and they really didn't have any other treatment for her-I told her I understood.

She was recently found to have an allergy to soy and wheat and she says when she got off of those for about 4 months it cleared up her dizziness but she is losing too much weight so is using them sparingly now.

It seems like such a coincidence to run into someone like that with such similar issues but also then today she called me related to an episode she had yesterday and as I tried to offer support and advice here she's been dealing with this forever.

I did invite her to this forum I hope she finds her way.

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Just discovered she had the allergy I guess within the last year.

When she gave those up for a period of time she felt better but lost too much weight.

She is very think-looks anorexic.

She says she eats all the time-like constant to keep herself going.

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Interesting about activity and keeping going (which sometimes feels like the last thing you want to do!) sometimes helps you along. I have to keep reminding myself of this...it's rough some days.

I like stories like this, though. Others are coping. I feel less alone. Thanks for sharing!

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Lieze

I find it really interesting that her symptoms improved, but she lost weight, when she gave up wheat - I had a similar experience when I was put on a grain-free diet (before I was diagnosed with dysautonomia, my doctor attributed my symptoms to allergies). Although I felt better overall, I panicked at the weight-loss, and a dietitian had me eating every two hours to try to contain it. It tapered off in the end, and I put a bit of weight back on when I stopped exercising. A couple of years later I read about the low-carb Atkins diet - I figured that, although I wasn't eating all of the Atkins-recommended fat, the effect of simply being grain-free was similar for me.

Also, re her worsening symptoms after the virus.... I had a series of infections more than 18 months ago immediately following an exacerbation of my illness (I was over-working at the time - it always sends me into a downward spiral). Over a four-week period, I had a nausea and vomiting bug, then a chest infection, then laryngitis, then a tooth abscess, then sinusitis, then conjunctivitis, then three bouts of tonsilitis (phew). I always recovered from an exacerbation of my illness with a couple of weeks of bedrest but, what with all the infections, I failed to recover and I seemed to keep going downhill. I developed a really distressing new symptom, had a recurrence of symptoms that usually sleep, and (to be honest) became fairly hysterical - I honestly thought that I was going to keep getting sicker and then die. I didn't die, I just recovered very, very slowly. I didn't know at the time that infection can really give dysautonomia a knock, and that recovery afterwards sometimes takes a while. I could have used some reassurance - I'm really glad that you're there to provide it for your workmate.

With best wishes

Dianne

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This is reassuring to me too, as my symptoms have gotten markedly worse since having a mono type illness AND flu AND bronchitis all in the same year, within a few months of each other. I was starting to panic somewhat that it was going to get progressively worse and worse, but maybe not, perhaps it's 'just' the viral things that have given me a hard knock and I'll see improvements little by little.

Thanks for sharing.

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Interestingly enough this is the thing that bothers her too.

No one will acknowledge to her that the virus she had made her dysautonomia exacerbate.

While she is frustrated with her fatigue and considering a change in jobs and nervous about this she also has like that unresolved issue I think of how did I do so well for so long and now why? do I feel this way?

I think many of us can relate to that. I did tell her that viruses were indeed a well know cause and she said she had even read that they were but can't get anyone to say so for certain.

I told her she is a success story.

I think she is just starting to see a connection with blood sugar affecting her which if she has had this for 35 years is great also. And she drinks only water and fruit juice so I encouraged her to try something with electrolytes and just continued to tell her how well she was doing just at the fact that she could still work.

I should point out the credit to my nurse therapist who pointed out that she thinks damage could have started to occur in me with the West Nile Virus prior to the chicken pox and that it just wasn't at a level yet that I could yet discern. She said she has another client who's husband had West Nile and had problems later associated with it that his actually returned which really ???? I was told or read or assumed can't remember which that once you had West Nile that then you had immunity and would never get it again. I may be wrong on that.

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Lieze

thank goodness you're there to reassure her. I hope she's also taking a look at this forum - there is a lot of good information here, probably covering all of the things she is most concerned about, including her concern about blood sugar.

I've met only one doctor who was familiar with dysautonomia - she was able to recognise it, but she wasn't familiar enough with it to give me basic information about management approaches. If doctors stare at her blankly when she tells them that her dysautonomia is worse since the virus, it is because of doctors' lack of familiarity with our illness, not because the connection doesn't exist. I'm not sure it is reasonable for us to expect doctors to have a good understanding of our illness - perhaps most of them will only see a couple of cases in their career. To me, this is why it is important to share our experiences - so that we all have a better idea of whats 'normal' for us.

If you feel its appropriate, please give her my regards.

With best wishes

Dianne

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