Hopefully I am posting this in the correct forum. And I am equally hopefull of finding others who are living with the same dreaded symptoms and have found some sort of relief.
I am a 52 year old male, in good health overall. I take ppi medication for reflux, and Diovan for high blood pressure.
Around the same time that I first began to take ppi medication, I noticed that I was waking at night with severe cramps in my calf muscles. I blamed it on the medication. I switched to a different one and it got worse. I switched to a third and it improved. I went off of ppi's for the better part of a year and I spent so much of my time and energy managing my reflux symptoms that I failed to notice if my legs got better.
For piece of mind, I went back on ppi's. Reflux under control.
The cramps continued, albeit irregularly. I also began to notice that I was moving my feet like paddles when I was trying to sleep. I didn't put two and two together for quite a while. It wasn't until I passed out from pain one morning after awaking with a massive cramp that I began to really examine what was happening to me. I did not want to live through that again. I began to take all of the suplements that people advocate on the forums. I tried them all. None made a difference. I changed my lifestyle. I stopped drinking any form of alcohol on weekdays. I removed diet soda from my favorite beverage list. None of these changes made a difference.
My GP referred me to a neurologist. He feared low iron. I went for an iron screen and it turned out that my iron stores were very high! Serendipity? Four phlebotomies brought the numbers back in the normal range. He tested me for neuropathy. Negative. I am now scheduled to do an mri of my spine to look for stenosis.... I am getting ahead of myself.
Because I came to morbidly fear those darn leg cramps and the fainting that follows (it happened again 3 months later), I began to turn introspective about finding a way to avoid them at all cost. Here is what I have learned about myself:
I usually sleep well for 2 - 3 hours after retiring. But I notice that I have this weird tingly sensation in my calf muscles. I am able to fall back asleep again, usually for 45 minutes to an hour. I awaken with the urge to stretch. I find that I can completely remove that urge by doing a full body stretch. I start seated, then after the first pass I stand and urge the stretching down to calf muscles and feet. I end up with an almost violent shudder in my lower legs. Sensation gone, I go back to sleep for another 45 minutes to an an hour when I have to do this all over again. The cramps have stopped, but my life is no better because of it!
I have no doubt that my leg cramps were occuring because my body was attempting to stretch itself while I was asleep and my feet and legs were in compromised positions. I still "almost cramp" routinely, but I seem to catch it by not allowing my toes to point forward. Since I awaken when the need to stretch occurs, and I do my stretching with my feet flat on the floor, I am avoiding the cramps. But, it has only served to highlight the underlying problem.
I am getting enough sleep to function quite well, but not every day. And, the fact that my leg issues are there every single night is beginning to weigh heavily on me.
My observations. Because of all of my "violent" stretches, I seem to always have some sort of pain deep in my calf muscle and achilles tendon. My deep muscle massage therapist can't even work it out. She tells me I have pain where there should not be any. Because I have become introspective, I now notice that I have leg tingling when I am sitting down, and can even identify it when I am standing up.
It is almost as if my calves are storage devices for electrical energy. They seem to always be alive with this excess enegy, and only full body stretches relieves that energy.
The neurologist will be looking for spinal stenosis on the mri. Perhaps there is pressure on the nerves, and they are in a constant state of excitement when they should be at rest. I find that sleeping on my belly affords me more time between waking/stretching episodes, but I can't stay comfortable on my belly for very long and end up on my sides involuntarily.
My hematologist suggested I try Requip and gave me a prescription. I do not want to go that route. My GP suggested I try valium. I hate taking them, and I have not, but I will long before I try that Requip.
I have tried supplementing myself with every type of vitamin asscociated with cramping. I tried B12 shots as one doctor suggested that I may have a masked deficiency and that it was causing nerve damage. I have compression stockings, which I like, and find helpful, but they do not alleviate the nerve issue.
Could chronic use of ppi's be involved. Only stopping them completely (and the resulting horrors of chronic heartburn) would provide that knowledge. I wonder how many chronic RLS sufferers are on ppi's.......
Either way, I find it amazing how little doctor's know about this condition considering that there are so many people suffering from it. I have yet to find a doctor that specializes in it, and I am wondering if any one else has. I also wonder if anyone suffers from the exact same symptoms as me, and has found a way to relieve them.
Best of health to all.