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  • #1

    IC Meds, PFD, Restless Legs

    Got my books on Restless Leg Syndrome and much to my horror the meds listed as escalating RL are; tri-cyclics like Elavil, and the antihistamines like Atarax. They apparently use Valium for RL as well as Neurontin.
    I have had very good results with Elavil for burning urethral symptoms and the pelvic floor spasms we all sometimes get. I see no reason why Valium wouldnt work just as well. The doses for the Valium are so low that they said it is unlikely a dependence problem would result. When Valium is used for depression the dose is usually much higher like 25 mg.
    Going to the sleep doctor this Tuesday with my sleep diary. Since I have had the sleep mask (it is like an oxygen cannula) my sleep has been much deeper, but I am still waking up at 2:00 AM and again at 4:00 AM. In the sleep lab they said I had a lot of leg movements at those times.
    Thought I would just let you all know about the meds, as maybe one conditions medication is causing the other and just a change in meds would help. Would also like to hear your input on how Valium does or does not work for those of you on it?
    Sammi

    Sammi

    Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
    Diagnosis: IC, PFD (both in remission)
    Tags: None
  • #2
    I've read that several people on here use valium for their pfd. I read in your other post that even benadryl can cause an increase in RLS. I've not had many problems at all since I stopped taking the Atarax....Thanks for posting all that you have regarding this. I'm sure that a lot of people will benefit from what you've learned!
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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    • #3
      Thanks Sammi!

      I have been having problems with what I think is RLS and I get it in my arms as well. I posted a month or so back about this and Katrina came to my rescue. Another thing that can cause RLS is anemia. I started taking my iron and the symtoms got better. I still feel the tingling somewhat but I can falll asleep eventually. I am also on Elavil and Atarax. How scary. I thought I was losing my mind and I really am not. It is so nice to know I am not alone. I bet a low dose of Valium is theraputic. I talked with a lady who went to see Dr Moldin. ( The author of the Survival Guide for anyone who doesn't know). He put her on a low dose of Valium and told her he puts most of his ic or pfd patients on it. I also read in his book that he believes you will not become dependant on a low dosage. It is something to think about. Rach
      When life hands you lemons make lemonade. But when life hands you a load of crap, don't make anything. Trust me on this one.

      Diagnosed in 2001
      Meds
      Elmiron, Elavil, Atarax, Ditropan, Prosed DS, Hydracodone when needed

      Comment

      • #4
        Rachann

        Yes, you are right. They have found in some people RLS and low ferritin levels were correlated. Not in my case though, my iron and ferritin levels are in the high normal range.
        The two books I bought on RL were Restless Legs Syndrome by Robert Yoakum which had a list of physicians in the back that treat RLS. The other one was Stopping Restless Legs Syndrome by Chet Cunningham which was easy to read, simple to understand, cheap, and had a good overview of the condition, treatment both medical and alternative.
        I see the sleep doctor Tuesday and am going to ask for Valium as that should help with the PFD also.
        Sammie

        Sammi

        Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
        Diagnosis: IC, PFD (both in remission)

        Comment

        • #5
          Sammi

          How did your doctors appointment go? Let me know if Valium is helping with your sleep and RLS. I hope you soon sleep like a baby!:woohoo: Hugs, Rach
          When life hands you lemons make lemonade. But when life hands you a load of crap, don't make anything. Trust me on this one.

          Diagnosed in 2001
          Meds
          Elmiron, Elavil, Atarax, Ditropan, Prosed DS, Hydracodone when needed

          Comment

          • #6
            Rachann

            Thank you for the kind thoughts. The appointment went well at the sleep doctors. They were shy about putting me on Valium and considered Valium 2 mg to be a "huge" dose, which I thought funny. They finally settled on Klonopin or generic name clonazepam which is in the same family (duh) 0.5 mg at bedtime. I cut one in half last night and feel fine this morning with no hangover or sleep coma. I only got up twice last night. This is the best I have done in two years. So, I really didnt have nocturia, I had a sleep disorder. Went to bed at 10, got up once at 2 and once at 6. I can sure live with that. They also ordered a Ferritin test, but I usually run a pretty high iron count, so I doubt thats the problem. In hindsight I think a lot of it may have been the overstimulation from the Ararax and maybe even the Elavil which I still refuse to throw out because when I have a bad PFD spasm or urethral spasm, it is still the best.
            Hugs to you all,
            Sammi

            Sammi

            Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
            Diagnosis: IC, PFD (both in remission)

            Comment

            • #7
              Sammi, I can believe it. I think alot of the medicine we take have some side effects, evening the ones doctors don't know. Even with the detrol la, if I'm out in the sun to long, I can have a heat stroke. Some doctors don't know that unless you tell them and they investgate in it to see.

              I am glad Sammi you are finding something that will help you, that is great. I am having problem with my legs too, but I am not on the medicine you are talking about, so I am guessing different things can cause it. It just trying to find out what it is. I am happy to know you find out what was causing your problems.

              Sammi I hope you will keep us update on all of this. You are so determine in finding answers. Thank you Sammi.

              Trishann

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              • #8
                Trish

                They really dont know the origin of RLS in people. In some they found a correlation with low ferritin levels, but this was just a few. Even children can have RLS. Sometimes it comes on after a bought of shingles or other illness, sometimes it seems to have no reason for onset.
                A good book, its cheap, gives a good overview, is not full of hard to understand medical terms is called,"Stopping Restless Legs Syndrome" by Chet Cunningham. You can find it on Amazon, it only has 64 pages and cost I think 6.00. It covers treatments, both medical, self help, and alternative as well as a list of people who treat it by state.
                Dont suffer with this if you think you have it, things can be done to help you.
                Sammi

                Sammi

                Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                Diagnosis: IC, PFD (both in remission)

                Comment

                • #9
                  Thanks Sammie, I will look into it. Thanks for the information. I hope you continue to do well.

                  Trishann

                  Comment

                  • #10
                    Sammi

                    I am so happy that you are sleeping better. It is so nice when you find something that works. Hugs, Rach
                    When life hands you lemons make lemonade. But when life hands you a load of crap, don't make anything. Trust me on this one.

                    Diagnosed in 2001
                    Meds
                    Elmiron, Elavil, Atarax, Ditropan, Prosed DS, Hydracodone when needed

                    Comment

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