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Mywackybody

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About Mywackybody

  • Rank
    Newbie
  • Birthday 01/25/1974

Profile Information

  • Gender
    Female
  • Location
    Foresthill, CA
  • Interests
    Photography, wood carving, artist, used to love arena softball, golf and anything active. Unable to do most of those things due to health issues.
  1. Mywackybody

    Strange symptom PD?

    I have tried Botox for my migraines and I had a very unusual symptom, my temple muscles atrophied significantly from my temple to behind my ears, they said it was an adverse reaction, but very unusual. I have also tried Gabepentin for migraines and pain but it gave me headaches becuase I am super sensitive to anything that makes me tired. If I don't get 10+ hours sleep, I am sleepy the next day to where I can't function and its a major migraine trigger. The chances of me waking with a "attack" when I am over tired is greatly increased. Can you cLarify when you say "could it be painful legs moving toes?" And what did you mean about the oxygen? I have been on the following meds, topamax, (for migraines, adverse side effects, autonomic worse, sensation issues) mirapex low dose (for restless legs and periodic limb movement, worked well but when I upped the dose, I got a strange rash, nightmares, irritability) effexor (for pain, caused horrible yawning, brain zaps, muscle spasms, didn't work for pain) clonazapam (for RLS, took for 5 years, new doc took off without sleep doc permission, when he put me back on it, it didn't work) requip (for RLS, augmentation, got RLS during the day and worsened the symptoms) amytriptyline (took for pain and migraines, effective but made my orthostatic hypotension worse) for my orthostatic hypotension and postural ORTHOSTATIC tachycardia syndrome I tried all the standard meds for it but Midodrine made me worse, when I would bottom out, It would would take longer to recover and the crawling sensations where unbearable, since I have many tics, it made it worse. I have only been able to use Propanalol, which brings my HR down from 160-180 to 120-140. Luckily my hear is healthy. When I stand, my legs get molten and blotchy, they itch. I find that the only thing that helps is caffeine, it doesn't raise my HR like most people but it raises my BP. I take flexeril only at night, if I take it any other time, I get restless and tired, getting migraine. I have perpheral neuropathy, basically my feet feel like they are burnjng, they don't have temp sensation at times, I get areas of intense itchiness and numbness. My thigh on my left will go numb from my hip arthritis this makes my RLS worse, pain is one of those things that makes it worse, the reason the oxycodone works for my RLS and PLM. When I take it, my legs feel relaxed. I also have GI issues, constipation mixed with diarreh, gastric delay, irritable bowel, my bowel will become Imobile and I have trouble emptying my urine, I have to make several attempts. Thank you for your reply.
  2. Mywackybody

    Is it PD or something else

    Sorry for the acronyms, I am so used to them I forget those who don't have them don't know. OH is Orthostatic hypotension and POTS is Postural Orthostatic Tachycardia Syndrome, basically if I am upright my heart rate goes through the roof.
  3. Mywackybody

    Strange symptom PD?

    I have a strange symptom that I thought was my severe Restless leg/body syndrome but my doc says it's not that. I take oxy for my RLS, I have some thing happen when my meds aren't working. I feel a RLS like sensation that shoots down my leg and out my foot, causing my leg to jerk and foot to cramp inwards. Following that, on the opposite side, I have a crawling/goosebumps sensation on the temporal side of my head, it crawls down to my neck and sometime shoulder, it isn't a sigular event, it repeats several times, only on one side for hours, ever 20-40 seconds. It has happened on both sides but doesn't bounce back and forth, one side at a time. I also have RLS opinion more than my legs, I get it in my arms, body and back. I have to hit myself to alleviate the sensation or I feel like I will loose my mind. My father and maternal aunt have parkinsons. I aslo have been suffering from autonomic dysfunction for over 5 yeArs. I have POTS and OH, and also have muscle twitches, strange fatigue and weakness, I feel out of sorts when walking on uneven ground when I used to be an athlete and I am twitchy, I am on beta blockers for my POTS and migraines and it helped the tremor I had in my right hand but it still shakes if I put it out. I am fidgety, I play its my cuticles until they bleed, bite the inside of my mouth, and can't keep my hands still. I have noticed that it has been getting worse as well as I feel like I am anxious and have no reason to be. I cAnt sleep, I take 10-15mg of melatonin every night, flexeril and oxycodone for my RLS. I have about 40+ white matter lesions in my brain, I get migraines 2 a week in average and I have Ehlers Danlos hypermobility. I could really use Advice, my docs are stumped, not a good place to Be because doctors are not like House, they have no desire to find out what is wrong with me, I am trying to get disabiltiy for 4 years, I have my hearing in June.
  4. Mywackybody

    Is it PD or something else

    I am 44 years old, female who has a father and maternal aunt with PD. I have a very unusual case, my neuro calls me an enigma. I have several (40+) White matter lesions that are from u know etiology. I suffer from severe and frequent migraines, they think the lesions are from that but not only are they more than usually seem, they are not increasing. I have been diagnosed with Ehlers Danlos Hypermobility and my doctors think my autonomic dysfunction is because of that, for 5 years I have had a tremor and twitching in my hands, beta blockers seem to help, but with them my OH and POTS are not. My HR is over 100 when awake and very sporadic, I have severe OH and my heart has been studied extensively and because it's healthy I think it's the only reason I don't pass out more. I have recorded 65/55bp, although it was uncomfortable, I stayed conscious. I used to be an athlete but due to automomic dysfunction, I had to quit. I have OH and POTS as well as constipation caused by motility issues, I have temp issues, vision blurring one day and not the next. The issues that make me worried about PD is my movement issues. If I use muscles, like overdo it, the muscles twitch and shake. I will go to type or touch things and it misfires. I also have issues with my breathing, I have double breaths (the same thing that happens when you cry too hard) all the time. Not related to stress. Some days I twitch, pick and am unable to stop moving. I tried adderall for my extreme fatigue but it made my twitches so bad, it damaged my tongue and caused uncontrollable twitching. The one thing that is the worst of all is my sleep disorder. I have SEVERE Restless leg/body syndrome, periodic limb movement and insomnia, I have tried all kinds of medications and am on the last step, opioids. I have had this for years. I was treated with clonazapam for 5 years but it stopped working. Mirapex worked but when I upped my dose, I develped a rash. I have videoed myself and later in the evening I will flex my left foot, kick and repeat every 40 seconds for hours, needless to say, my hip and back are sore the next day. I have several symptoms my doctors tell me are not RLS related, one thing that happens (and I am wondering if anyone else has this happen) I get a shot of electricity down one of my legs, when it exits my foot it craps inward, immediately following that, on the opposite side, I get goosebumps that travel from my temple to my neck, sometimes my shoulder. It will repeat and it has happend in both sides, but only one when it happens. I get this Restlessness not just in my legs, I feel like I am going to loose my mind, i get it in my arms, body, back, and I will hit myself or tense the body part to give some relief. I would kill myself if I had to deal with this all the ti,e because the second I relax, it starts up, so basically I am not Able to get any sleep if I don't have my meds. I also am unable to fall asleep if I don't have my nightly cocktail and sometimes even with it I cant. I take 10mg of melatonin, flexeril, and my oxycodone. If I don't take one of those, I am up all night until the sun comes up. I go to slee at 11pm, fall asleep around 1-2, wake 11-12 noon and am still tired. The worst, is lately I have noticed that not only have I begun to have anxiety and thoughts of fear, especially with the moon. It seems to get a little worse everyday and I meditate. I used to be a calm happy person, but I feel like I am wound up. I bite the inside of my cheek repeatedly, so much it causes my jaw to go out of alignment. I worked really hard to figure out what was wrong with me, I am very medically inclined and I don't know what or why I am this way. I am unable to I'm because I get migraines, with my HR so high all the time, I am exhausted. If I do anything, even small things I pat for it. I can't drink becuas anything that throws me off by only a little I wake with a hangover like migraine that takes me out (body chills, sweats, diarreh, throwing up, pounding pain, aches. I want to die! I also noticed my left arm isn't singing as much as my right. I have muscle twitches if I overdo It, I also have bad joints from the Ehlers Danlos. I have had 4 surgeries on my thumbs, hip surgery and I is getting worse. I am unable to function because of my autonomic dysfunction that has been noticeable for 6 years now. I was a surgical tech and standing the docs thought I was nervous because the low BP and High HR make my right arm Shake. Now I only shake if I engage it, use my thumb, it moves on and off, but I am very twitchy. Sorry I got too wordy, it's frustrating and I am scared.
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