Head roll

[Tim63]

Well I just made an extremely long post and for some reason it did not show up. Darn it!…. Well I can’t now. But I want to say thanks to Deb. I can relate to the electric leg feeling and had a whole lot more to say. Hopefully I’ll get it done later tonight or tomorrow.

[Rustsmith]

Well I just made an extremely long post and for some reason it did not show up.

The system has a time limit for creating posts. I am not sure, but I think that it is around 10 minutes.

Therefore, when you write an extremely long post, you can sometimes exceed the time limit. The work around is to either break it up into two parts or to submit your post after about eight minutes and then immediately edit it, which restarts the timer. The catch is that you only have about a minute to edit a post that has been submitted before the system locks you out of being able to make changes.

[Tim63]

Thanks rust… actually it’s probably for the best. I was really going long and perhaps a bit too personal haha…
I think what I really want to say is that any condition like RLS can be difficult to even know where to start. I had three scenarios that were in this kind of category. Headaches, panic attacks and RLS. The headaches were the first if I recall correctly. I had no idea how strange it was going to get. I just assumed I go to my doctor and tell him about this headache I was getting and he would do whatever he needed to do. But that’s not what happened. He asked me to point to my headache and describe it. Then he said that was not a headache. I’m not kidding… I pointed to my forehead. He said headaches are more on top. He did prescribe something but I forgot what. Well whatever it was it didn’t work. So I went to a headache clinic and basically they said the same thing. This was back in the late 80s so a lot has changed since then but here I was with a pain in my head that for some reason the doctors sort of blew off. And being young I didn’t know what to do so I lived with it. Now just so you know it wasn’t a super bad migraine. But it was still a pain that was undiagnosed. The pain came and went so I just dealt with it the best I could. Anyway this went on for 25 more years and got worse. Finally my doctor asked me if I ever saw a ENT doctor. No I never did. So I went to one and two surgeries later I’m much better (although there is more to that story). My point is you can’t be like me and just accept a doctors word. Don’t get me wrong I’m not saying they are out to get you or something… just that they are human also. This was a big revelation to me and I want to hopefully prepare the uninitiated for reality. If you have pain or suffering you must be diligent in your search for relief.

[Polar Bear]

It's awful that you went undiagnosed for all that time.

So many doctors are not good at treating RLS. We must always do our best to educate ourselves and be able to discuss our condition, discuss the merits of different medications. Some doctors are wonderful and a treasure, others not so much.

[Rustsmith]

I have had to self diagnose my last two medical conditions and then go to the doctor to request the appropriate treatment. In both cases, I was like you and had been complaining about symptoms that the doctor blew off. I have since come to realize that medical specialists are incapable of thinking outside of their own specialty. Further, most GPs are working against a clock for each appointment and unless the believe that you have a life threatening condition or are contagious, they will say anything to get you out of their exam room.

As for headaches, yes things have changed. About six years ago, I woke up with an intense headache on the top of my head. I have migraine headaches and this was very different. I asked my wife to take me to the ER. The ER doc saw me immediately and when he heard my symptoms, I was immediately rolled back for a CT scan. Turns out that he was afraid that I had an arterial embolism. Thankfully, it was just a strange headache that a dose of a strong NSAID was able to relieve. Doctors take head pain seriously now because they can be symptoms of so many serious conditions other than the standard types of headaches.

[Polar Bear]

Slightly different..... In June last year I had a dreadful headache at the base of my skull. It got worse over a couple of days. One evening I rang the out of hours duty doctor and he told me to going to ER. My husband took me. By this time my hair was soaking wet and I had towels with me to keep mopping my hair. I was sobbing while waiting. Doctor took bloods and I had very high infection levels. Meningitis was suspected. A CT scan was done and a lumber puncture. I was admitted to hospital and started on heavy doses of intravenous antibiotics over 4 days. It was not meningitis but it was a severe infection..
I had an MRI done which showed narrowing of the spinal column with narrowing at the neckn where the nerves come out. This is what was causing the headache.
Never hesitate where a headache is concerned.

[Tim63]

Polar bear and Rustsmith…. I hope you both are doing much better with the headaches…. Bear that’s a rough one…. Actually this reminds me of another situation that went badly. My mother in law was very old worldly and had a stomach ache for months before me and my wife even heard she had a problem. The very night we were informed she had to go to er and barely made it out alive. Thankfully sfter months and months of recovery she had a few more years with us. Folks I know doctors can be scary… especially for those old fashioned people who never want help. But the alternative is not good. She probably could have just had antibiotics and would have been fine. And then there were some people in the family who knew well before us but just assumed she was ok. Not a good choice!…. I had to drag my wife several times to doctors. It’s hell on earth but after they fixed her up she never regretted it. My advice is to be proactive with all medical professionals. Shop around if you don’t feel right with your current doctor. I love all my doctors now. Also…. While I don’t have any pre conceived idea as far as race or gender of the doctors I choose, for whatever reason female Indian doctors just seem to do a much better job for me. I can’t put my finger on why… it’s like they have a built in mental state that makes me believe they have my best interest in mind.

[Ragnar]

Tim63 I can relate to your current situation. I have tried numerous medications and years ago my Dr. perscribed Oxycodone. It was like a light went off and I was cured from RLS and also felt "normal" which was weird. Recently my Dr. perscribed Oxycontin ER (extended release) that I am currently testing for 2 weeks to see if this is a better option than standard Oxy. My biggest challenges are convincing my Dr. how effective these meds have been but his concern will always be about creating an addict. I have been on pain meds for 15 years now and have never abused these meds. A constant struggle trying to prove to my Dr. how much these pain meds have benefited my life.

[Rustsmith]

My biggest challenges are convincing my Dr. how effective these meds have been but his concern will always be about creating an addict.

The next time you see your doctor, provide a copy of this document which was written specifically to educate doctors like yours that opioids are appropriate for RLS.

https://www.mayoclinicproceedings.org/a ... X/fulltext

As for creating an addict, that topic has been so overblown by the media. Years ago, an insurance company did a study of chronic pain patients (who often take opioid doses 10x higher than we do). They found that so long as patients were pre-screened for addictive behaviors (alcoholics, gamblers, etc), the chances of a patient becoming addicted was 0.8%, which is 8 in 1000.

There are several sentences in the article that address the issue of addiction. Highlight them before giving the document to your doctor.

The first doctor that I gave this article to as so surprised and pleased that the next time I went for an appointment, he sent his PA in to see me so that they could both thank me for sharing and educating them on this topic that is so critical to the proper treatment of refractory RLS.

[Ragnar]

Thank you so much for this article. Often times I find myself having to once again, convince my Dr. the meds are good and work very well for me. I will forward to him tomorrow.

[Tim63]

Ragnar… I agree 100 percent that opioids have changed my life. I probably have said this already but prior to being on norco for an extended period of time I had nothing to compare how I felt. And it actually took a while before I figured it out. Yes the media definitely made me think very negatively about it and at the time I believed it was helping depression. So I tried to do what I believed was right and get off the opioid. And I actually tried several times. I went way past the time of any withdrawal. So I knew I could get past that easy. I just felt horrible even after months. But that strange guilt that the media and my own sense of morals had on me I felt that I was being weak and my focus was on that rather then the incredible benefits. It’s like there was a pressure on me that made me overlook very simple facts. Facts like I was getting very good sleep. For several years now on most nights when I fall asleep I wake up 6 plus hours later in what seems to be the same position I fell asleep in. And time seems different. Years ago when i would wake in the morning i had a sense of how long i was sleeping. Now there is almost no sense of time from the second I fall asleep until I wake. It’s like in the past I was sort of aware when I was sleeping. And now it’s complete unconsciousness. I hope that makes sense. That alone changed my life. I lost weight and even gained muscle. Just a little but I’ll take it haha. Now I know the difference between good sleep over a long period and the bad sleep I had all my life prior to norco. It’s a big deal!

[Tim63]

I just was watching an interview movie director Christopher Nolan. I don’t know how to put a link on here. I wish I did because I’ve found a pretty good way to describe my main RLS symptom. But you would have to hear it. What I’m attempting to do is describe what I’m feeling with a sound. A special effect he uses in his movies. Now of course I FEEL my symptoms right?… they don’t actually make a sound haha…. But this sound ( called a Shepard tone) is a way to at least give you a clue as to what I’m feeling. I googled Shepard tone and unfortunately there are many ways to make this sound so you just can’t do a search and find it. This particular one is from one of his movies and it fits very well to how I described earlier in this thread how I sort of feel like the incredibly hulk …. Like I’m bursting out of my own skin. I’ll try to figure a way to post a link. I’m not the best with any of this technology. But boy does this seem like a good way to describe the RLS symptom! Maybe someone can try to go into YouTube and type in…”why the music in Christopher Nolan’s films make us so nervous “….. It’s the very first special effect sound they discuss… I would love to be able to link it here!…. Because that is what it feels like in my body… not as bad or dramatic as it sounds in the clip but it definitely makes sense at a lower intensity.

[Rustsmith]

I don’t know how to put a link on here

To post a link, you need to click the button that says "Full Editor and Preview", which adds a few icons above the white text area. To post a link, click on the two little linked chains near the right side (just to the left of the little flame), this will add something that says "{url}" and "{/url}" but with square brackets instead of my curly ones. Paste the URL for the link in between the sets of brackets so that it looks a bit like {url}https://YourLink.com{/ur}"

You can do the same thing to quote someone, like I did, with the double quotation mark icon. Quoting someone prompts the system to send them an email that their message was quoted.

[Tim63]

[https://youtu.be/oIYbD3CQqVQ?si=U2EAUa5HX02muJ7i

[Tim63]

Ok so I was able to post a link to a YouTube interview. The interview itself is irrelevant but if you just listen to the first minute you will hear a sound called the shepherd tone. Now as I said earlier my RLS symptoms FEEL like this…. Not as bad however. I mean if you had that going through your body it would be unbearable. But at a lower intensity yes… this is a lot like how it is. Now ad a buzz or creep feeling and pretty much that is the closest I can come to describing it. And then as we all know when I move it goes away. Thank God for norco. Because it works! I never have even the slightest RLS when I have enough of it in my system. I know most of you seem to have it mostly in your legs. For me it’s all over. I guess at night it does seem more in the legs but it would be incorrect to say it’s my legs.