RLS or FML?

[JustKeepWalking82]

It is an excellent idea. Ann, I went to an urgent care clinic and was able to get enough tramadol to get me through my sleep study. Otherwise, I wouldn't have even been able to stay still long enough for them to put the wires on me! I would have had to catch a flight today to go back home and waste hundreds of dollars. Thankfully, the tramadol worked and I stopped taking Lexapro four or five days ago because of the risk of seizures involved between the interaction of them. What do the WED Foundation events entail? I might want to go to one sometime, if that is alright.

[ViewsAskew]

It is an excellent idea. Ann, I went to an urgent care clinic and was able to get enough tramadol to get me through my sleep study. Otherwise, I wouldn't have even been able to stay still long enough for them to put the wires on me! I would have had to catch a flight today to go back home and waste hundreds of dollars. Thankfully, the tramadol worked and I stopped taking Lexapro four or five days ago because of the risk of seizures involved between the interaction of them. What do the WED Foundation events entail? I might want to go to one sometime, if that is alright.

Glad you found something.

The Foundation occasionally holds regional meetings. They are always announced ahead of time and posted on the their website and here. They used to hold a national meeting - but the expense is too great. I've been fortunate to attend the prior national meetings and present at several regional ones.

[badnights]

Hi just, I want to welcome you here and give you my very very best wishes for finding a good doctor! I didn't have time to digest everything you said and I have to get to bed now (thankfully, I usually sleep these days! ) but clearly you;re in a bad situation, so just don;t get too bummed out because once you connect with that good doctor you're looking for, life will start an upswing for you. (No matter how bad it might seem right now)

Have you emailed Dr B? even having him tell you somethign you already know can be comforting. Best is if you can show his response to your new doctor. Bester (sorry, it's late) of course is if your new doctor already knows all that...

[JustKeepWalking82]

Thank you for the warm welcome, Beth! I am in a bad situation, but I feel better knowing that you all are kind individuals who understand. Your compassion and care for me and everyone is overwhelmingly wonderful. Yes, I hope the upswing is sooner rather than later.

I still need to e-mail Dr. B. I got home on Sunday and got back on my Nucynta. Because I was unwillingly off of it for five days, it was very strong when I took it that night. Although I can't complain because I get very good naps and sleep when it is like that. My mom and I talked on the phone on Saturday and she finally agrees with me that I need to go on something like Oxycodone/Percocet since I have become emotionally homicidal (my behavioral changes that are a result of a side effect/allergy to medications are always anger ((very irrational, I snap at the littlest things, and depending on the person could make them cry- which I would never do otherwise)) due to the Hydrocodone. My mom is going with me to see our GP next week because she wants to help me convince him that giving me something like Oxycodone/Percocet is the right thing for me. She wanted me to go in this week because the headaches that I have been having constantly (I go to sleep with one and it is there when I wake up) for a week and a half is excruciating, but the only day that both my mom and the GP have open this week (my Mom has PT every Monday, Wednesday, and Friday for a tibial plateau fracture that she had to have surgery to fix and my GP was out all last week and volunteers at an ER on Fridays) is the one day that I can't go because on Thursday I have to get an echocardiogram and get a holter monitor for a month because I have had a history of having my heart rate go up to 155 during rest. YAY.

[badnights]

Hey Marisa, you mentioned at the very beginning that they were still trying to figure out what was wrong with you, and that WED had joined the mix, so to speak. (Or perhaps I misunderstood.) What other diagnoses do you have? What do you have an endocrinologist for? Many of us have multiple disorders, and sometimes one or the other exacerbates the WED, or is confused with WED, or the meds for it affect the WED.

I forgot to mention that I also had strong mood swings on gabapentin. Your doctor who said it was impossible obviously had preconceptions about you and you will get nowhere with someone like that. I got deeply depressed on three occasions. I couldn't wait to get off that drug! But the internist who prescribed it had left town, and the neurologist he had referred me to kept putting me off. I finally convinced my GP that I was desperate, and got to see the neurologist, but pissed her off in doing so. Sigh. And yes, it was ultimately a sleep doctor not the neuro who helped me.

Do you have any results from the sleep study yet?

[JustKeepWalking82]

Hi, Beth! We still don't know what is making me get the headaches and other painful symptoms. I had a bout of it in junior year of high school, but it only lasted a couple of weeks if I remember correctly. Since entering college, I have had it severely both times when I had to drop out. I have hypothyroidism, an extremely rare fever syndrome known as FAPA Syndrome (It is not PFAPA) which stands for Fever Adenopathy Pharyngial Adenovirus and you have to be born with it; it is not contagious. When I was six, there were only 11 people in the entire world who were diagnosed and we all were in a study to see how it progressed. There seemed to be a link between it and ALL. The first patient I believe was diagnosed in 1987. We had twins from the Middle East who ran it at the exact same time! I also have kidney stones that were discovered when I was nineteen, ASD, Central Sleep Apnea, and Chiari I Malformation. I see the endocrinologist for my hypothyroidism, which wasn't that unlikely because I am a third generation with thyroid dysfunction. The kidney stones threw everyone for a loop because apparently I am way too young to have them (I have one in each kidney).

He did have preconceptions about me. The Gabapentin did make me feel like I was going to die and having a panic attack at the same time. It didn't help that I was also on Clonopin which seemed to exacerbate the problems. I had to convince my GP to get me in to see the neuro as well, and I got to see him but pissed him off in the process as well considering he refused to see me and sent his PA in instead all the while glaring at me when I walked into the office and when I walked out. So, I definitely know how you feel, Beth.

My endocrinologist, who prescribed the sleep study, and my GP get it either today or tomorrow I believe.

[badnights]

Good gracious, to be polite about it, you certainly have a lot to deal with! And now WED, too. I hope the sleep study reveals something useful, and the sleep doctor knows how to approach your treatment.

[JustKeepWalking82]

Beth, the sleep study did reveal something. I have been experiencing CSA since probably Feb of 2012, but the first sleep study I had (May 2012) didn't show anything (I only got about 3 hours of sleep) except RLS and PLMs (which the neuro didn't even talk about treating. Poop Face.) However, this time the two-night sleep study confirmed CSA and I am getting fitted for a CPAP machine really soon. Apparently, I am the youngest person that some people have ever heard of of having CSA (I turned 21 on the 18th) which didn't make my mom feel any better. Thankfully, it was caught. I miss Houston, though. I grew up in a few cities in Texas before I moved to Gulf Breeze to be closer to my grandfather who had COPD and CHF (he died in May of 2012- one of the greatest men I have ever known. I am honored to have had him as a grandfather.) In fact, I was born in Dallas and then I lived in cities like Danville and the last city I lived in was Conroe which is only 30 minutes away from Houston. So, I miss Houston a lot and am a big city girl.

Unfortunately, I had to wear the CPAP machine on the second night of the sleep study and it didn't help my headaches or the pains at all. Sigh...

[badnights]

But to have that diagnosed! How wonderful that we have the knowledge to diagnose and treat (such as it is) things like CSA nowadays. Has the CPAP made any difference yet? I imagine if you look back after 3 months of wearing it, you will see a huge improvement. And having the apnea treated should help reduce the WED symptoms, which flare up worse whenever our bodies are stressed or losing sleep (yay! like you can't win). How is it going?

[JustKeepWalking82]

And they called to tell me that I was diagnosed with OSA instead of CSA which all of my other doctors say that it sounds like based on my symptoms. Looks like it is another un-hit Whack-a-Mole. Sigh...A company called Pulmonary RX called me as I was on my way to take my mom to get her Midline/Port/Pic out of her jugular (she finally finished infusions for infectious diseases this past Thursday after 5 months of everyday infusions! YAY!) and it turned out they were Houston based, so when I told them that I lived in Florida and would need a local place, they said that they would contact the sleep doctor who worked at the sleep center. So far, I have yet to get a call back and have not received my CPAP machine. My mom is P.O.'ed of course, because they gave me the wrong diagnosis *cue angry mother bear roar* Other than that, we have had a ton of rain and that doesn't make my WED happy; which sucks because I LOVE the rain. In other news, how are you doing, Beth?

[badnights]

I am crazy busy, partly because symptoms have been flaring up and I always seem so ineffectual and useless when they do, so I am trying another "no coffee for a few days" treatment. I haven't done that for a while, and it's something that seems to work when I have bad symptoms day after day after day...

I think OSA is better then CSA, at least I would prefer it, I think.

[JustKeepWalking82]

I am about to go crazy. My neurologist quit all of a sudden on me regarding the opioids and in so few words- myself. He didn't even tell me to my face. He had a nurse do it. My psychiatrist can't see me until the 18th because he was out of town for a week and can't prescribe pain meds, I quit the caffeine because I got so ill from passing two kidney stones in two days 7/9-7/10, and my mother is now telling me that she is refusing to continue on with her cancer treatment for her terminal bone cancer because she doesn't want to see me like this anymore and thinks she is holding back from continuing on with school (which is actually the restless legs which are very severe, the mild degenerative changes in three vertebrate, and no sleep from the WED). I have still been off of caffeine. The medicines that I have taken have been the gabapentin, clonopin, requip, fluvoxamine, xanax, nucynta er (which worked for a while but then got to too high of a dose that almost killed me according to my mother), and lexapro. I need to break the opioid contract that I have with my neurologist when he made me fill it out in order to get the nucynta. I also have an appointment with Rye on the 17th of this month but now my mom doesn't want me to go because she now thinks that it is not necessary and too far. She has also told me sometimes that it is all in my head and if I just concentrate on something else or do chores, that the sensations will go away. They don't. She had WED but only for a few months and not nearly as bad. Florida also has really strict laws concerning narcotics (still the only things that work) and every doctor is covering their butts leaving the patient to get into legal trouble if they go to another doctor for narcotics while still under the care of another even if that doctor isn't prescribing anymore. I have no idea what to do. I feel like just jumping off the nearest bridge or just crashing my car into a tree and hope that it kills me.

[ViewsAskew]

Oh, my! Sounds like so much is going on for you.

I had a doctor do that to me once, too. it was awful. She didn't tell me, either. She just didn't send the script that was due and I had nothing and no time to go anywhere - it was a Friday, same as you.

I guess doctors are human, too, and many of us do not like conflict, but not telling someone? That's just terrible.

How much medication do you have left?

[jul2873]

Oh Marisa, you're breaking my heart. I have no advice to offer--just a rising fury at politicians who make it almost impossible to get opioids, no matter how much suffering you are enduring.

Mary

[badnights]

I also have an appointment with Rye on the 17th of this month but now my mom doesn't want me to go because she now thinks that it is not necessary and too far. She has also told me sometimes that it is all in my head and if I just concentrate on something else or do chores, that the sensations will go away. They don't. She had WED but only for a few months and not nearly as bad.

I hope you saw Dr Rye?? !

Sometimes people with mild WED, if they also suffer from a deficit of imagination, can assume that what they feel is what we feel, and therefore seriously underestimate the potential impact of the disease.