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Everything posted by valiz

  1. I was having, what I call involuntary body jerks. I also had accompanying involuntary moan/groan at the same time of the jerks mainly when falling asleep. If I had them during the day they were less severe. The severe ones happened when I was trying to go to sleep or that transition time. Some times I just had several and other times 10-12 before I could finally go to sleep and stay asleep. As you can imagine I had terrible insomnia. After numerous times my body would quit wanting to go to sleep. That was the first symptom to resolve after I started taking Northera (Droxodopa). Unfortunately I can't afford to taking it past this year unless I can get help from NORD or some other organization. I don't at all understand the mechanism causing it. I have PAF. I know this doesn't help you but wanted to share my experience and let you know you are not alone. Elizabeth
  2. Thank-you for your response, Kim. I only had Northera for 4 more days so I "bit the bullet" and ordered my Northera at the specialty pharmacy and charged it. I also contacted my Physician's office to see if there might be something else to take but I don't think there is anything in that classification. The office is looking in to see if they can get me any assistance but I doubt they can. I have been on the phone for hours at a time making calls or on the computer looking for help to no avail. I appreciate you letting me know if you have any new leads. elizabeth
  3. I'm wondering how many of you with dysautonomia have or are taking Northera caps (Doxadopa)? I started taking it 2 1/2 years ago. I has been a "game" changer for me. It has given my quality of life back in many respects. From the beginning of taking it I received assistance from Caring Voiced Coalition with the co-pay, in fact they paid all of the copay. This year they are not giving out ANY grants. They gave me names and numbers of other organizations but none of those helped me. I called my specialty Pharmacy today and they said my bill will be $2,600 some dollars the first 2 months and then by March through the rest of the year I will have to pay 380. some dollars a month because by March I will be through the "donut hole" on my Medicare. The Pharmacy said they will try to get me help but no guarantee. I have an IRA but no huge amount but too much for help from Medicare extra help. I guess I fall through the cracks. It is very disheartening. If anyone has any suggestions, let me know. I am already on Florinef and Midodrine did not help me. My diagnosis is OI and PAF. I was on this site quite a bit when I first was diagnosed but have not recently. I hope all of us can stay upright! Elizabeth
  4. I have that happen occasionally too. Sometimes it is in the area you describe but more often I feel it in my feet. I figured in the feet it was neuropathy. What is methyldopa? I take Doxadopa (Northera). I feels like vibrations to me when it happens.
  5. Could you update us on how the Mestinon is going as far as benefits and side effects. Has it affected your sleeping in any way? What is LDN, I am not familiar with that medication? Praying that you are having good results. elizabeth
  6. I don't exactly get this but in the morning when I wake up I have trouble opening my right eye. Sometimes I have to open the eye lid manually and other times if I keep trying, it will eventually open. Anyone else with this symptom? I have PAF. liz
  7. I have ridges on my nails too and no "moons". The ridges have gotten way more pronounced then they used to be. I have no clue as to what causes this.
  8. I have a CBC every 3 months. I have noticed that my RBC's and WBC's are always low or borderline low. Anyone else?I read that this can be autoimmune disorders. liz
  9. You have an appt for a movement specialist in Feb so until then I would try to stay positive and try to stay calm. I know it is easier said then done. I am a person with strong faith and I will certainly pray for you. If you are like me though you do want to get MSA ruled in or out. For me I want to know what is going on whether it is good or not good. liz
  10. Sylvie33 Welcome to the forum. I am an older member here. I believe I had dysautonomia from about age 13. I had a number of syncope and presyncope episodes. I also had flushing, fatigue, chest pain. I was able to get through nurses training after high school. When I was in my mid-late 20's I feel I went through a "remission". About 15 years later symptoms started returning along with other nasty new symptoms. After a number of trips to the ER and still undiagnosed I was referred to a nephrologist because of dehydration and diabetes insipitus like symptoms. He referred me to Johns Hopkins, where I had my TTT. I was diagnosed with POTS and NMH (NCS). I had a seizure and fainted and had my B/P bottom out. I get weakness to the point of being unable to to do anything for myself and sometimes cannot talk even after my syncope episodes and it lasts around 2 hours. According to my doctor I no longer meet the criteria for POTS but now my diagnosis is PAF and NMH. Meds that have helped me are Fludrocort, stablized at .3mg a day, Venlafaxine 75 mg and Northera 300mg 3 times a day. Midodrine did not help me. I had very low pressure all the time but your doctor will hopefully find what helps for you. The worst symptoms I still have are fatigue, insomnia, neuropathy and much muscle, joint pain. I have DDD in all areas of the spine. I sympathize with your diagnosis and the fact that you have had to take a LOA from you profession. I had to give up my nursing job as well. I hope you can find a good diagnostician....very important and also a doctor that can treat effectively and sometimes "out of the box". Prayers for improvement for you. Liz
  11. Ancy, I too have overcompensation( a high B/P for me is 145-150/ 90-100) after passing out from low B/P.. Otherwise my B/p stays low to normal in spite of taking Fludrocort .3 mg once a day. Fludrocort has been a big help since I am hypovolemic and am now able to retain fluids better. I have no edema even with that dose. liz
  12. Thank-you for your replies. It helps just to be able to ask questions and know that you care. liz
  13. I was wondering if anyone else experiences tightness and discomfort in the lower lung/diaphragm area. It feels very tight like their would be a tight band around it. I believe I am a shallow breather. I do use a C-pap at night for apnea, My original diagnosis was POTS and NMH but now have progressed PAF. liz
  14. I too, had many nights of jerks/jolts when relaxing and trying to go to sleep. Besides the jerks I would make an involuntary loud groan like noise. I would startle my husband and my mini dachshund. It was so hard to sleep anyway and with this going on it made sleep almost impossible. I haven't been on this site for some time because I have been doing so much better. I started on Northera (Droxadopa) in June. It has completely stopped the jerks along with helping many more symptoms. I started out with a diagnosis from Johns Hopkins of POTS and NMH. It has now progressed to Pure Autonomic Failure. I believe 15% or more POTS patients do progress to PAF, is what I have read in articles written by autonomic specialists. Praying all of you with this symptom will find something to help. liz
  15. Thank-you Cib 75. I did my part of the paperwork and took the rest to the Dr. office and they will do the rest of the form and send to Northera. I'm expecting for it to be a lengthy process.
  16. I was prescribed Northera. My insurance at Target couldn't get it even from their specialty pharmacy. I talked to the nurse at the clinic and told them to fill out the paperwork on Northera.com So we'll see what happens. If any of you have suggestions let me know. I hope it will help me. liz
  17. I'm not on any beta blocker, and I have the rash. I thought it was the Midodrine but I'm off of that medication so I know it wasn't that either.
  18. I have the same thing a rash all over my body after a shower or bath. I would be very interested as well as to what is causing this in dysautonomia.
  19. I have a lot of neck pain with or without migraines but not exactly like what you are describing. Best wishes to you. Liz
  20. So happy that you are improving. Thank you for sharing your knowledge. Liz
  21. I well remember you Issie. I often wondered how you were doing. Thanks for the update. Best wishes as you continue your journey. Keep on sharing your experience with us. Liz
  22. You are doing well with English. I know some German but I would have a hard time telling you my health issues in Deutsch. I agree with Katie that you could certainly have dysautonomia and I pray that you can find a Dr. that knows about dysautonomia and how to treat it. Liz
  23. Guten Tag Andrea. I have no answers but I wanted to welcome to the forum. Looking through old threads may help you and I'm sure there are others that will give you some ideas. I'm so sorry you have had to take chemotherapy and are now experiencing dysautonomia symptoms. Liz
  24. I'm so glad this topic was brought up by Sue. It is reassuring to me that I am not alone in these symptoms. My Doc has said, "you don't have Alzheimers" I hate having to deal with these symptoms that make me feel so demeaning and worthless. At least I am not alone and there is a reason for it.
  25. Tobiano, do keep us updated. praying that it will be beneficial for you. liz
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