My Nonprofit Reviews

I began experiencing WED/RLS at about age four. My father had the disease as an adult and both my children are now experiencing symptoms in their 20's. I am currently 59 years of age and would describe my symptoms as extremely severe. I use to be able to control symptoms with regular exercise.
As I aged and had three pregnancies my symptoms continued to worsen. During my middle thirties my symptoms increased causing severe sleep deprivation. I was married, raising children and working as a nurse. Despite exhaustion I did manage to function at a fairly high level. I had over the years sought lots of medical assistance from doctors whom would look at me like I was crazy when I would describe the symptoms. I literally could find no help. As my sleep deprivation worsened I became depressed and was treated with antidepressants which helped my mood and possibly improved my sleep a bit.

I believe in the late 1990's I saw a commercial for Mirapex which described my symptoms completely. I was so excited and made an appointment with a sleep specialist who did prescribe Mirapex for me. For about 2 years it was a miracle drug for me. I was getting major relief from my WED symptoms. However as time progressed I needed to continually increase the dose. I developed compulsive gambling which I had no idea was related to the Mirapex. I had never enjoyed gambling previously and was completely thrown by this compulsion. I attended Gamblers Anonymous, never carried cash, tried many things and was unable to control the gambling. My gambling was rightly fully so causing severe marital issues . It was on a commercial for Mirapex that we saw compulsive gambling as a possible side effect. We made an appointment with my sleep specialist, he stopped the Mirapex cold turkey and started me on a very low dose of Requip. The full onslaught of my WED symptoms returned. The Requip did not help and I was in severe pain and unable to sleep at all. Gabopentin was also of no help. Later I learned that this transition from Mirapex to Requip may have been easier if my physician had slowly reduced the Mirapex and started the Requip.

Im sought help from my Family Physician who referred me to a neurologist.
By that time my sleep deprivation was so severe that as I would pace the floors at night I would literally fall asleep standing and fall to the floor. Unfortunately the neurologist I saw was not well informed on R
WED, diagnosed me as in a manic phase of bi -polar with the WED symptoms a side effect of the mania. He prescribed Lamictal. As I understand there is a 1/ 100,000 chance of a serious reaction to Lamictal. Within 24 hours of beginning the medication I was having severe visual and as
auditory hallucinations, extreme physical agitation with continued severe WED symptom, and massively suicidal. With a bi-polar diagnosis, the neurologist and emergency room physicians did not believe that I was having this rare reaction to Lamictal. No one would listen. At one point another neurologist was called to the E.R., questioned why I was on the Lamictal and placed me on Sinemet.
I did experience some relief of symptoms with the Sinemet. A few days later when I called my neurologist for a refill of,the the Sinemet he angrily refused. At that point my husband said I needed to stop the Lamictal, basically stating ' you saw the neurologist initially as an exhausted woman and he has made you crazy. Stop the Lamictal'. I did as he suggested and so thing a few days my mind began to clear. I made an appointment with the neurologist I had seen in the Emergency Room. Due to my history of reactions to medications he was concerned about prescribing anything other then Sinemet, but at least I was getting some relief and was no longer feeling crazy.

I am now 6 years post Lamictal incidence. The Lamictal has caused my WED to worsen, have had definitely cognitive damage and am no longer able to work. Methadone is the only medication that now relieves the pain of WED, but unfortunately causes severe debilitating depression. Without the Methadone, the electric voltage type pain, need to be aggressively moving at all times 24 hours a day and the inability to sleep makes my life unlivable. The Methadone increases my depression to such a severe level that 50% of my days, all I want to do is die. I know it is the Methadone because when I stopped taking it and used Oxycodone my mood improved significantly. Unfortunately the dose I need to control the pain is higher then my neurologist is comfortable in prescribing. Therefore I had to return to the Methadone.

WED truly controls my entire life. I am no longer able to work at a job I truly loved, have lost friends because the depression can make it too difficult to socialize at a normal level, my husband and I can not do the things we hoped to do at this point in our lives, and everyday is a struggle for me.

The WED Foundation has truly been a life saver for me. The information, support from administration and the ability to read others stories has as I repeat a life saver. I so not say that lightly. It truly has stopped me from injuring myself and has at times given me reason to hope.

Thank you.

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