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Flop,

Oh, my!!! That sounds awful! OWWW! As Melissa said "bring on the drugs!". I can't believe they are making you lay there in pain! How awful! I hope they get to you first thing Monday and things go smoothly after that! It must be awful coming to after fainting and having that happen... I can't imagine.

Sending positive healing thoughts over the pond!

Hi,

I do think I have seen it published a few places in research that eating disorders can be a trigger or cause of POTS. As for the science, I am not sure anyone knows. But, it does cause a lot of stress on the body, and there are hormonal imbalances etc. so it doesn't seem unreasonable to figure it may have something to to with each other.

Hi,

Are you sure you are not in sinus rhythm? What makes you think this? Diagnosed and always/majority of the time not in sinus rhythm?

As far as how low is too low? It is based more on symptoms. If you have severe unrelenting symptoms and a bp that will not raise to help rid of some of the symptoms, then it is likely time for the ER. When you have low bp it is important to try and raise it so it doesn't go lower, so you don't have to worry about the ER. Work to raise it with salt and fluid loading. Make sure all of your meds were taken appropriately. Use compression stockings etc. if prescribed. If able to get up and move around to raise BP, also can to ankle pumps etc. to encourage the return of blood back towards the heart.

Melissa,

Hi! Sorry I hadn't replied yet to your other post. I was sad to see that you had an infection yet again. But, I was glad to hear that it seemed like it was caught early and that the source was automatically found and able to be taken care of! I hope that things continue to go well for you in the hospital and that you are able to spend your birthday and holidays at home! The wound debridement/packing etc. sounds VERY OWWW!!!! Oh, my! Everything you have to go through! You are such a strong person! I hope things work as planned and you are out of your Cleveland fishbowl soon!

Sending positive healing thoughts!

P.S. I am not sure if you saw my previous post semi-recently thanking you for recommending Dr. Shields. That helped me so much!!! So, I wanted to make sure and say thank you! I am horrible about returning PM's etc. though... THANK YOU!!!

Hi!

Hope you are able to find some answers and relief soon! Sorry I don't have any specific help to offer, but I am sending positive healing thoughts. I can not imagine all of what you are going through. I hope that things wind down soon for you, and allow for a good holiday season. I would hate being stuck in the hospital through the holidays. I hope that you are able to be seen by one of the masto. drs. and they can help you out!

Hi all!

I have been wanting to post for a couple of days, but my concentration hasn't really been there... Todays a bit better, so we shall see if I make any sense...

I had my second dexamethasone suppresion test to test my cortisol levels. First time it was way high, and somehow this time it was "normal". Now, she really won't believe me that I took the dexamethasone the first time! So, I am not sure why there would have been such a difference? So, for now I guess no more looking at anything down this route.

I also had the glucose tolerance test and after WAY to many phone calls and frustration they more or less added checking the insulin levels as well. From what she said over the phone, all the numbers were really quite good. So, I do not feel that there are any problems there. So, thats good!

I have had a couple of other recent appmts. including Toledo and my GP. Nothing has really changed, nothing has been figured out etc. It is frustrating! But, I do still have to get a hip x-ray, where my hips have been VERY painful in the joint and through my quads. This is on top on the Trochanteric Bursitis and sciatica... So, it is getting old fast!

Oh, I guess I also had forgotten to update: THANKS to many people on the board (sorry can't remember everyone), including Melissa (Sunfish) referral suggestion I did get my neurologist who didn't know what to do with me to refer me to Dr. Shields at the Cleveland Clinic. My first appmt is in Jan! Thanks SO much for ya'lls help!!!!! Being able to get somewhere with that really helped me out!!! THANKS!!!!

I also have started on Cymbalta (about a week). Overall, very few side effects especially for me! Sleep has been a little off, but there is always that adjustment period. So, I am off the Wellbutrin and on a lower dose of the Zoloft. Of all the meds I have tried in the past few months this has been the one I have seen the quickest and most significant positive changes. Overall, it is actually hard to pin down what it is improving... I guess more energy (at times), better cognitive skills, and seems to be a bit better control of autonomic symptoms (heat tolerance etc). I am still trying to see where this is leading... But, am slightly optimistic!

This is already so long and I kinda forgot my questions, so I think I will leave it at this for now!

I REALLY do want to give THANKS to everyone on this board that works so hard, and has given me many positive thoughts and suggestions!!!! Ya'll have helped a ton!!!

Nunibenuni,

I didn't look at disability services prior to choosing a college, because I didn't have the diagnosis or need yet, but it sounds like a good idea. So, I am not familiar with what can be done prior to registering etc. I think taking into account issues like parking, accessibility to areas you will likely be, and how far between classes you may have to walk (especially with a small amount of time).

I also think that it is beneficial to go to a school that has an Office of Disability Services (or similar) that has sources of assistance and a counselor that you are assigned that you can contact as needed and get a timely response. I also found it helpful that my college was large enough to have a disablity coordinator that is a lawyer that if needed acts to assist you on your behalf in dealing with a particular program or professors.

And just overall any other services offerred. I knew someone in undergrad that due to disability was able to have a single dorm room (no roommates), so if you may have to live in a dorm that may also be something to look at.

Hope that helps!

Hi,

Sorry for the diagnosis confusion. I don't know anything about Canadian drs. or drs. that specialize in MSA. I wonder if Mayo would be a good place to try?

I hope you find some more answers soon!

Hi,

I am not exactly sure what they are meaning without looking more into it. I am thinking that they are trying to determine the extent and/or origination of the neuropathy. Like if it is originating from the spinal cord or after the spinal cord (more peripheral). The ganglion is a mass of cells just outside the spinal cord at each nerve root level. It is made up of multiple nerves, the nerve going from spinal cord to the ganglion is the pre-ganglionic fiber and the one from the ganglion to peripheral nerves is the post-ganglionic fiber.

Not sure if that helps? I am not sure what he study says about how one helps differentiate what problem it is, and how that may change treatment?

Ernie,

Sorry that I am a little behind here in responding. Ernie, I am so sorry. It is so awful the things that some people will do to other human beings. What he did is so beyond words... The original actions that were taken by him were reprehensible, inhumane, etc. Then, to just make things even worse the hospital etc's lack of response to this is purely inexcusable, and to allow someone like that to work around people... I am pretty much beyond words. No one should ever be treated like this.

I can only hope that over time he and those who stood in the way of protecting patients will be caught and brought to justice. I hope that you continue to be able to deal with this awful experience and seek help from those around you. I hope that you are able to find support through support groups, womens groups, or counseling.

I think that it is brave and amazing that you have done so much to stand up to him, and return to that hospital as needed to accompany your family members. You are a VERY strong person. Continue to not let him ruin or run your life, but keep yourself safe. I hope that others will be able to go with you whenever you return to that hospital for appmts.

Stay strong and we believe you!

Julie,

Yeah, she hasn't said much other than it was an odd test result and wants to redo the test. And of course to make sure and take the pill! I am waiting to do my GTT to then do this test (previously I had to wait to get myself to the pharmacy to pick up the meds). So, redo the test. Likely have same result and then she makes me take a larger dose and then get blood tests and go from there. She never said the words Cushings syndrome, so I don't know exactly what her thought process is... Other than I didn't take the pill! We'll see! And yes I will take the pill! (again )

Hi again!

I wanted to add that I did ask the endo whether or not it was a fasting test, and she said no it isn't... but to make sure that I take the pill. I was told it again twice over the phone after telling the dr. on the phone when discussing the results that I had taken the dexamethasone. So, she doesn't believe me that I took it and that my cortisol really was that high! I thought it was kind of amusing! I think she may finally be able to begin to understand! Wahoo!

Also, I asked my PCP and she boohooed the who checking insulin levels on the GTT, so then I called the prescribing dr. to request it be added- no response yet. We will see... but, I have tried to also investigate this avenue of testing.

Julie, did your hear your results?

Also, to anyone who has taken dexamethasone (or I guess any other related steriods) what was your reaction? Granted this is a low dose. I was told I may experience insomnia etc. I took it and laid down within 15 min. I was having rapid irregular heart rate, not awful, but noticible. Then my vision went blurry. Then I fell asleep quicker than normal, slept hard, and then actually overslept with my alarm. Also, was semi-groggy when woke up. So, from my knowledge some of this would not have been the typical or expected response, has anyone else had similar reactions? Just curious, because I know I didn't have the expected insomnia!

Thanks!

Hi!

Welcome! I think that there is overlap at times between inner ear disorder symptoms and dysautonomia, but there is a lot of differences as well. There are a handful of people on the board that have both an inner ear disorder and dysautonomia. But, treatment for the two IS different and treatment of one could make the other worse, so it is best to know what you are dealing with. My own personal opinion is that it sounds like you really need to look into getting tested at a vestibular clinic. So, not just go to an ENT, but go to a dr. that specializes in vestibular disorders. Then, as some people have mentioned even if they do not find anything concrete, for some people the vestibular rehab is helpful for the symptoms you describe.

Also, I would encourage you to continue to try to find answers on the dysautonomia side of things.

Also, your post almost madee it sound like you are assuming you have craniocervical instability, tethered cord, EDS. Do you have these diagnoses from a doctor or is it based on symptoms that you have? Because that would be a whole other ball game... IF that was the case you would also want to consult with an EDS and/or other applicable specialists.

If you are not located by doctors that understand these conditions you may need to travel further to see a doctor that does look for and understands more than your "typical" conditions/disorders.

I hope you find help soon!

Sara is in my thoughts! I hope it goes well! Keep us updated.

Yes, symptoms are variable from day to day... It is annoying to not know what to expect. I think the weather (cold, snow/rain, barometric pressure) and hormones have a lot to do with the day to day differences. There is also always the differences with hydration, meds, food, sleep, stress etc. But, you noted that for the most part those have been about the same.

Also, could it be from you have the weekend to "recover" so Monday could be a little better than Tuesday? Or the weekend is better than days you work?

Hope that your are able to get some rest and tomorrow is better!

Hi,

I think most of everyone else already covered it, but a HR of 200 is not necessarily a go to ER moment. It is more about the other symptoms you are having AND how long it lasts. If it is sustained than, yes it may become time to go to the ER. I go over 200 sometimes, but or less it was for a matter of minutes without decreasing and with a lot of symptoms I probably would not go to the ER. But, if the symptoms are there and it is not coming down- yes, ER is the way to go. My sis has had that happen a few times with runs for hours at 200-250+.

Hope you are feeling better!

Hi,

I am not really sure, but it would seem to make sense if your heart is having to work harder and beats faster and at an irregular rhythm on a daily basis, that this level might be "higher" than "normal". I don't think it necessarily means anything bad, like heart damage, is occurring. I think it may be more of a signal that your heart is working harder on a regular basis. If the cardio. isn't worried, I don't think that at this level it should be too big of a problem. Maybe just something to watch over time?

Hope you are feeling better!

Hi,

I haven't been retested, but my actual diagnosis was like a year and a half ago... I don't understand retesting close together or less there is a DIFFERENT test they want to do or the technology has greatly increased to show something new and different. But, I could MAYBE see testing again (TTT etc) 5-10 years later after original diagnosis or major change to see if the body's response to the test is very different. Even with this I am not sure that this would often change treatment? So, would it even be worth the retest? Not sure? I guess it depends on what they are looking for? If it is the same thing that was tested before, I don't see why those results would not be acceptable?

Good luck!

Agreed, this is a great place to come for information and support! I would not be where I am now if I wasn't part of this board (I would be much worse off).

Thanks to everyone who puts time and energy in to the board and helping others!

Thanks for the update!

Amy, I will be sending positive thoughts your way for you and your family during this difficult time. I hope that things go as smooth as possible the next few weeks in this transition period.

Hi!

Hope everything went well! Keep us updated!

Oh my! It sounds like you have so much going on! I don't have any personal experience with any of that, so I don't have any pearls of wisdom... I wish I had some help to offer.

It just seems like it is just one thing after another, you must be exhausted! I know I would be! I hope that the upcoming dr appmt goes well, and that things can calm down soon for you!

Hi!

I haven't tried it, not sure it would help me much or that I could tolerate it. You may also find more info on the web and in old posts searching using the term abdominal binder. There is a few different types of things out there. Some are more for back or SI joint problems, where you want it for compression.

Great job! Straight to the point and illustrates everything well! The pup is too cute!

Not sure... four months seems kinda long. Are you able to see what the dr in Boston thinks? They are probably more aware of what to look for and what things mean.

Good luck!