Noreen

I now drive 4 hours to see an Atlas Orthogonal chiro. I had AMAZING results with this. It is a very specific and you are adjusted by an instrument that is the size of an ink pen. I honestly couldn't believe that something so gentle (you barely feel it) worked so well with my POTS symptoms. I walked around an entire week with heartrates in the 70's. That hasn't happened in well over a year. So, my suggestion would be to just use a different technique because yes anything too "forceful" can have a negative impact on me. I had a very intense accupressure massage and had one of the biggest crashes I have experienced afterwards.

See if you can find an Atlas Orthogonal chiro anywhere near you. They are very hard to find as not many practice this technique. Hence the reason we drive 4 hours.

Good luck and hope you get to feeling better.

Do you know anything about chiros that practice nucca techniques ? Nat'l Upper Cervical Chiropractor Assoc They had a remarkable study on blood pressure.

Years ago, when I was facilitating the local pain group, I had an atlas chiro in for a presentation. I really don't understand the differences between these techniques.

I am very leery of anyone touching my neck yet have pretty much constant pain from it.

Wheelchairs are helpful. I refuse to use mine except when I have to wait in line somewhere. Which for me is only at the doctor's office. I only leave the house to go to relatives or doctors. This is important, get one that reclines, I cannot sit too long without my heart rate going over 100, so a regular chair is worthless.

Frank

Frank-

What wheelchair did you get? I am looking at a tilt in space wheelchair and am wondering what the difference is between that and a reclining chair.

tks,

noreen

When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea.

Any suggestions would be appreciated.

While checking on links for another post, I ran across this on the American Sleep Apnea Association website -"Having your child evaluated for Sleep Apnea".

I hope you find the information useful.

"Okay so I have the study and I find I have sleep apnea. After a recent 35 pound weight loss - it's classified as mild where I only stop breathing 12 times per hour or some such thing. But my 02 sats were bad dipping to 72%. I earned the coveted CPAP machine."

Nowwhat-

At least you got the dx. Untreated sleep apnea causes heart damage over time due to the oxygen deprivation according to most studies. Link to audio on UK mild sleep apnea report. Link to general info.

Additionally sleep apnea has been associated with memory problems and cognitive issues (Link, Wiki).

As an added incentive in adjusting to your mask, using the CPAP machine can help you lose weight. Sleep apnea can actually contribute to weight issues - a chicken and the egg type thing. I hope your doctor is working with you to find the best equipment fit for you. By fit, I mean more than correct sizing and choice of CPAP vs. BiPAP. There are many many masks and nose pieces on the market. It is worth seeking out equipment that will work for you as you know you will have a problem with compliance.

Obviously, I take sleep disorders seriously and think they are underdx'd.

wishing you the best with your new sleep attire ,

noreen

When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea.

Any suggestions would be appreciated.

Your cardiologist is misinformed. Children can have sleep apnea as well as other sleep disorders. My son sees a pediatric sleep specialist. Hopefully there is one associated with a sleep clinic in your area.

I hope you feel better soon. I know how horrible you feel.

Don't forget chicken soup - the broth has needed sodium and you still need nourishment.

noreen

Susan -

That was very amusing - thanks for sharing! Bruno is one unflappable dude.

love cats -

noreen

I tried B-12 when I first had my POTS crash in 2007 and it made me MUCH worse. I had horrible insomnia from it. My new doc immediately checked my B-12 levels on my first appointment with him and I had 5 times 2X the normal level of B-12 in my blood from the supplement. I just can't seem to use it once it gets into my system.

Did you notice immediate problems with taking the B-12 or did they develop after a couple weeks on it?

A regular sleep study does not involve imaging. It seems like a particular REM sleep disorder is associated with the neurodegenerative issues. From my read, they then did SPECT imaging of those with the dx.

A sleep study still might be a good idea as it can uncover issues that play into how you feel. Anything that helps is good, right?

Okay - you all do have some good points to consider. One I understand is to maybe understand that I interpreted the comment negatively and defensively when perhaps it was his odd-ish way to say give things more time. Thanks for the caring comments everyone!

...

I'm sorry for being so thin-skinned & irritable -- I feel foolish for letting that get the best of me - I need to think before I talk and rant...

You have nothing to be sorry about and you most definitely should not feel foolish.

Maybe you should think of it this way - By posting, you were able to release the stress the doctor and nurse caused. Since you weren't feeling as stressed you could constructively address other issues such as completing the report for Dr. F. I think everything you did was appropriate.

We're here for support. sweetie, and you can't be the superwoman you'd like to be and do everything yourself.

((hugs))

noreen

I saw Dr. Khurana yesterday at Union Memorial in Baltimore.

He said he has to wean me off the Cymbalta long enough to do the testing, but will put me back on it when it is done. This makes me anxious, as it is the only thing that has helped with my neuro pain.

I wanted to thank everyone here on the forums for keeping me sane while I waited to be seen by him. It is greatly appreciated!

I would have said the same thing about Cymbalta 7 months ago. However, due to insurance issues (workers comp) I ended up going off it after being on 60 bid for 4 yrs. It was not nearly as bad as I feared and actually some symptoms are masked on it so I am treating pain locally.

In the same time frame, my cardiologist was trying to get my cholesterol down and I had been going to the cholesterol clinic. By June my cholesterol and trig were down attributed to 4000 fish oil supplements and diet (had side effects with plavix, etc). A couple weeks ago I ran across a link between Cymbalta and high cholesterol - to my mind this explains the drop more accurately. During the cholesterol clinic despite great diet I would have unexplained rises in triglycerides - the diet was not nearly as good prior to my last visit and I had good numbers.

just my experience,

noreen

Sue, I want a doc with a magic wand too

I actually ask my doctors for a magic wand. Obviously I am not wrapped too tight - lol.

The blood type results stand out to me.

Type O is supposed to account for 60%+ of the population. Here is a link

I have NCS and OH not POTS. I was put on Pristiq. Extremely similar.

I felt great!!!!!! Ha HA, I had tachycardia from it, and they took me off.

It kept me from the HR and BP dips I have constantly. I was put on Wellbutrin 75mg one a day.

sustained release. One a day means 12hour result. Its meant for 2x aday. This is because my resting HR (IE sleeping)would not be effected. I love it, I can stand still for

the first time in years- without symptoms.

Wow. That is wonderful.

Are you on any other meds like midodrine for the NCS?

I have noticed this too. I have been waking up between 4 and 5am this whole past week when normally I wake up around 7 or 8. I do feel less Potsy -- a bit less dizzy and more focused at 4 or 5am. I force myself to go back to sleep however because I would be way too tired to function all day ...

my head so dizzy and groggy and then I stumble down the stairs in an almost drunken stupor desperate to get some coffee in me to relieve the weirdness in my head. Not sure if this is similar to what you are experiencing?

You described today's morning for me to a tee. Did not feel too bad when I let the cat out at 5, back for a little more sleep - at 7 I was slurring my words begging for coffee - couldn't lift my head off the pillow or even lift the cup - needed a straw.

It is so hard dealing with the unpredicatability of all this nonsense!

Yeah, I focus on my AC and that puts me to sleep. That's one of the things I focus on. Thanks for the reply. I just have to relax.

You might try different sizes of microbead pillows. Here is a link to Amazon. I got a couple of mine at Bed Bath and Beyond but couldn't find it online(disclaimer: could be nonfunctional brain). They are lighter to move around and not dense so you don't get the whoosh in your ear.

wow, this sounds like me. I end up going to sleep between 4-6 am. I have also tried staying awake to go to bed early, but then I get a huge amount of energy around the time I should go to sleep. Saturday, I took a 3 hour nap so I could get up and watch the Alabama Penn State game that came on at 1 am my time. I stayed up all of Sunday and I still couldn't go to sleep until 4 this morning. I was awake over 24 hours with only 3 hours sleep and I still couldn't force myself to go to sleep. It's really frustrating. I dont know what to do at this point to get on a more regular schedule. The few times I have taken something to go to bed early I end up sleeping forever and waking up at my regular 2-3 in the afternoon. Anyone have any suggestions?

Reread the answers Firewatcher and Mighty Mouse provided. As tough as it is that is the only real way to do it. If you don't have a GP for a sleep med, you can take a Benadryl (I hope it is available in Switzerland) or Melatonin (use with caution with dysautonomia - take half of a 3 mg pill the first time you try it).

I know it feels lousy to be sleep deprived.

all the best,

noreen

So if I keep myself hydrated and take precautions with how I feel, It should be relatively safe?

Thanks.

Garrett

You know by now it won't kill you but the price you pay may vary each time - even if you get the okay from your doctor re: meds.

Remember you can be very popular as the Designated Driver.

I was checked for Myasthenia Gravis, but the test was inconclusive, in the zone between you don't have it and you do. So, the doc said I didn't. If I do nothing else, I can walk/exercise and do normal things like anyone else....one day a week. If I try to do more, I'm weakened and incredibly sore for days. A half a mile walk has never hurt my muscles this much in my life! I can't seem to make any gains at all, or achieve any conditioning. It is very frustrating.

Have you been checked recently for fibro? With weather changes and at certain unknowable intervals I have incredible pain as you describe which has always been attributed to fibro. If you can get into a pool therapy program, that helps.

Generally, my feeling has been that occasional pain med relief is a good idea to stop the pain cascade that can then last for weeks.

Are you having more pain as you have adjusted your meds as you are trying the Eastern approach? Just wondering whether this is playing a part.

I saw this article in the NY Times recently on topical NSAIDS and have wondered whether it is worth pursuing.http://www.nytimes.com/2010/09/07/health/07pain.html?scp=1&sq=NSAIDS%20topical&st=cse

That is rotten. Isn't it usually women the docs do this to?

After you have had a chance to step back from the overwhelming irritation and frustration, would it be possible to write up what the doc and when, what happened, etc. and FAX it in? We are always at the mercy of the nurse and her interpretation of the doctor's mood whether to minimize or not, the symptoms pts are reporting. The same words said in different tones can convey vastly different meanings.

I had similar thing happen with my cardiologist. I was going to schedule appt and then the Midodrine thing happened and realized I better get a 90 day supply to have in hand. Now with my blood pressure and heart rate issues I need to get in but am trying to get up the courage to call - not sure I can take any more dismissive answers myself.

((hugs))

noreen

Hydration?

three hours later and you would be that much more dehydrated.

I do wear compression and have done strengthening exercises, but I am just as weak as before with long lasting soreness.

I knew you had been wearing compression garments and had, in fact, been doing a search this morning for the ones that had worked best for you. So my question was probably mostly curiosity.

For the soreness, I swear by Arnica gel. I know you are really looking for the answer or a solution but I can only offer support.

hope you find some answers,

noreen

Do you notice any difference wearing your compression garments vs. not?

Have you seen a doctor? Has your primary care physician already prescribed anything like muscle relaxants or ordered x-rays?

With all the symptoms in your head and neck, it would seem like a good idea to see a neurologist. You should be prepared with the old MRI and a report detailing how the neck issue first came on and how the symptoms progressed. He/she will review the MRI and order a new one if indicated.

As part of this process, you need to evaluate if the pressure is only present when you are upright. Is it worse when you stand, when you move around, when you sit? Does it start out okay in the AM and progress the more you are upright? Is it better when you can have neck support? If being upright is the issue, you may need to request an upright MRI.

That's all I can think of right now - maybe someone else has more input.

edit: I went all the way out of the forum (didn't lg out though) and it worked. beats me.

I am O neg but the poll does not count me (I tried twice to make sure it wasn't me); shows 0 people 0%