Noreen

Julie-

My son's issue is sleeping too much (hypersomnolence) not insomnia. He needs 11 to 15 hrs of sleep and trying to wake him is like going into a grizzly's cage.

I had him on OTC zantac prior to seeing the nurse practitioner and mentioned that urgent care had recommended an H1 and H2. Oh well moving on. I think I will move his zyrtec to night and switch back to zantac.

You should call the cardiologist's office to discuss your concerns. A diagnosis of NCS does not mean he is in imminent danger of dying. It sounds like there are underlying cardiac issues to be addressed by the doctor.

If the doctor can't or won't answer your questions, you are then faced with whether you want to continue with this provider or whether your son's health would be better served by an expert.

Only time will tell with a lot of this although I know you want a magic wand cure. The docs don't have one - believe me, I have asked!

The middle of the road answer is those who do not need full-time wheelchairs tend to use rollator walkers (see examples) with a seat to use when fatigued. Lifting equipment is not easy. Even if you take apart a wheelchair to put it in the trunk, you are standing in one place for a period of time to reconstruct it. There are probably lightweight chairs such as you are envisioning but I am sure they sell for over $1000 which is not doable for many of us on disability. It is necessary to remember that the disorder can evolve and need for a reclining chair becomes apparent. Many of the reclining chairs can only be reclined by an aide.

There is a hybrid rollator travel wheelchair examples which some may find most convenient.

Here is a link to check out the vast array of wheelchairs available. http://www.spinlife.com/wheelchair_store.cfm

jenwic

Apparently one of the latest rediscoveries is cleaning your hair without shampoo.

Here is a recipe for one using baking soda, vinegar and water -

http://www.livingonadime.com/homemade-shampoo-recipe/

Hope you find it useful.

noreen

It is early days to worry about a pacemaker. My cardiologist mentioned a pacemaker 9 years ago when I was first dx'd and not since.

Increase his fluids and salt and check out the Dinet page on NCS-

http://www.dinet.org/NCS/ncs.htm

Remember to breathe and take one step at a time.

noreen

Thanks for the info on zyrtec sometimes being at the root of irritability and tiredness. I took my 15 yo autistic son to urgent care last month for an anaphylaxis episode - he said he couldn't breathe and so off we went for a shot of steroids. There had been no exposure to anything different. The end result was to add an H-2 to his zyrtec. His primary prescribed prilosec.

His autism presents with irritability and he has hypersomnolence (11 to 15 hrs per night) of unknown origin (nothing to put your finger on on sleep studies) so having a clue to switch back to claritin and when to time the meds is extremely valuable info.

Earlier this month he went in with a sore throat and saw a NP. He had developed an outbreak of his strange rashes and I finally had medical confirmation (hey if they don't see it it doesn't exist). This rash had developed between leaving the house and his sitting opposite me in the exam room - about 45 min. As the nurse took his vitals(bp 90/50 sitting) , she asked about it and I also told her about the dermographia and wrote Hi on his back. When the NP came in she checked him asked about the rash and I rashed his shirt to demonstrate the dermographia but the Hi was still there after the 5 to 7 minutes since the nurse had left. So we were left with it being noted in his file.

Now I can't predict when the rashes will appear so seeing a derm seems problematic. BTW, allergy testing showed nothing.

His psychiatrist noted the episodes but thought I had a handle on it (???) meaning I had knowledge of mast cell activation disorder. Frustrating in the extreme since she is an autism psych so should know that there is a tenfold incidence of autism in the mast cell population.

I am unsure whether claritin would control his seasonal allergy symptoms but would requesting opinions on whether the best trial would be claritin twice a day along with the rx prilosec or claritin in the AM and zyrtec at night.

Thanks for any insight you can share.

noreen

That is an extremely interesting article, firewatcher. Thanks for posting it.

The HPA axis used to be the focal point of fibromyalgia in the early and mid 90s. Naturally this research made a lot of sense to me. Of personal interest, of course, is their research into autism since my son has it.

Thanks again,

noreen

Godsgal and 718mom-

wonderful that you have had some good experiences with docs.

Might I suggest that you send the text of your posts to staff@dinet.org so the info is available from the main website for anyone looking in that area.

noreen

Mine runs just like Julie's (Mack Mom)

It is possible to have other things in addition to POTS.

Do you have any swelling where you feel the pain? Are the areas warm to the touch?

An acute RA flare makes me feel like I am walking on broken glass.

Thanks Corina

It helps to know I am not the only one with these issues. What gets tough to sort out is frustration from lack of memory and adrenaline surges which can overtake one.

Corina-

Are your systems just done in a notebook or did you purchase a system - if so, what brand?

Memory is one of my worst issues and it can be especially hard as you are fine then stand for a minute or two and have no idea what you thinking or doing.

{{{{{{{Naomi}}}}}}}

All I can do is offer hugs and understanding.

I hope tomorrow is better.

noreen

Brilliant in his field and also a wonderful person. He has written many short stories and anything he writes (including journal articles) is a pleasure to read.

to get an idea of him as a person, chec

k out this interview

Since you have put so much research into light therapy, I would really appreciate your sharing the product you have decided on. My cognitive issues won't allow me to keep the info I research.

tks

Hey Sue-

I thought I was the only one putting off needed dental work!

Welcome. I am glad that you now feel comfortable posting but, of course, am sorry you have dysautonomia.

I hope you continue to find help here and look forward to getting to know you.

The guest number can be misleading. Members not logged into their account, e.g. using a work or different computer, will show as guests.

Michelle and the other wonderful Dinet volunteers have made sure that info is available to all through Google search. Some people will end up here as guests while they try to understand their or family members symptoms. The huge growth in use of this site has got to be what has become overwhelming for Michelle and why she needs a break.

CMRulz

All they have to do is explain that. They can read the forum for more information but can't post.

Think of the flip side - the forum would be unendated with people who only want in for a day. Bandwidth is not free.

I have issues with goosebumps on one side and not the other. It can drive me nuts as one arm will have goosebumps and want a soft blanket and the other arm is hot. Iy can be half the body, too.

Strange stuff.

Mitoaction had an extremely well received presentation on dysautonomia Friday. The presentation and great slides are available thru link below.

dysautonomia slides

The tilt table test is horrendous is you actually have NCS/POTS. I describe it as a medieval torture device.

I won't do one again.

Validating usually means responding to an e-mail with instructions on how to complete registration. Does not appear to be a time issue as someone joined yesterday and completed the validation process within the same day.

Just a fyi re: Cymbalta.

I was on 60 mg bid for several years. Last year my cardio was concerned about my cholesterol and I had to see a nurse every month for a while. Diet changes were not doing anything. I went off Cymbalta due to an insurance issue and 2 months later my cholesterol was under control without cholesterol meds. I have since heard that cymbalta is associated with elevating cholesterol.

I do 20-25 minutes on recumbent bike 3 times a week. I also then do light weight circuit training on machines I can sit at - I skip anything where my arms would be over my head. The elliptical and stairmaster are impossible for me.

I have the same history with gym classes as Nowwhat and Firewatcher. I got hurt so many times in gym class that my high school teacher eventually had me show up in uniform and then let me go outside to smoke (this was the seventies) for the remainder of the class.