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Everything posted by p8d

  1. That's so wonderful and in such a small city too. It's such a relief to find a knowledgeable Dr. I'm happy for you all.
  2. Has anyone on Medicare gotten IVIG covered?
  3. Oh yeah. Once I couldn't get out anymore a large number of friends disappeared. I don't even get many emails anymore unless I email first. I try to remember that they are all busy people dealing with their own lives. It doesn't really bother me much anymore. Those that stick around are worth their weight in gold. I also have my dogs which are good company and the best husband ever so I know I am lucky.
  4. Medicare and IVIG?

    Thanks so much clb75. I will look into it asap. Psalm23, I tried Ritalin and something else in the same class and they both gave me tachycardia and diarrhea. I believe there is something else out there in a different class but I can't recall the name right now (brain fog today). It's been three years now and I really want to go see friends and go anywhere other than Dr appointments and PT appointments. What have you tried?
  5. TENS unit for pain

    Yogini, can you please post your experience? I too have coat hanger pain, a bulging disc in my neck and can't take NSAIDs. Thanks!
  6. Medicare and IVIG?

    Psalm23, Interesting about Imuran being more aggressive, I didn't know that. My rheumatologist was considering it when I was having digestive issues which Plaquenil made worse. My gastroenterologist said to take Imodium if that works and allows me to take my meds. She said retaining the meds was the most important thing. Rheumy agreed so that's what I do. Next time I see the rheumatologist I'll ask about Imuran again. Do you think that the IVIG helps with the overstimulation? I'm housebound because of that and the fatigue. I haven't found anything that helps with the overstimulation. PCP prescribed transdermal scopolamine but I haven't tried it yet. It's nice to find someone with such similar issues, although I wish neither of us were so afflicated. Thanks so much for the info!
  7. Medicare and IVIG?

    You sound quite similar to me Psalm 23 except for the bp. Mine fluctuates too much but I am hyperadregenic too. After my positive ANA for mixed connective tissue disease I was put on Plaquenil which has helped the most with fatigue and pain in my joints but the fatigue is still overwhelming. Thank you so much for responding.
  8. I'm curious if those of you who have difficulty with moving/swooping cameras on t.v.have issues with moving vehicles too? Anyone else?
  9. What's next after propranolol?

    Has anyone discussed Florinef to help you retain blood volume? It raises bp and can be used instead of, or in addition to mestinon or midodrine. I too tried several beta blockers before I found Bystolic which doesn't make me so fatigued but I think that it's starting to wear off which seems to happen to many of us. I don't know that anyone knows why. Side effects are always the bug bear. I can take Florinef but not mestinon or midodrine (severe diarrhea). Unfortunately it's trial and error because we are all so very different.
  10. Medicare and IVIG?

    Thanks Psalm23. Does it help? If so, what symptoms? I really, really struggle with fatigue, overstimulation and of course hr/bp. I will have the Celltrend test soon, nothing showed up on the Mayo panel but my cardiologist and neurologist are both pretty positive it's autoimmune given positive ANA. Thanks.
  11. Medicare and IVIG?

    Thanks, clb. I will do as you suggest.
  12. Hi. Does anyone else stay tachy for much of the day after doing light aerobic exercise? I either do the stationary bike or rowing machine but it seems those days my heart rate stays high for several hours. I'm on a beta blocker which usually keeps it pretty stable along with lots of water and salt. Thanks.
  13. I'm on Bystolic and have tried taking a half dose after exercise but it tanks my bp too much.
  14. Oh the PEM is horrible if I overdo anything. I'm very slowly learning my limits but it all seems so random. I have managed to increase my aerobic and strength training to multiple times per week with the help of a PT but I have days and weeks of set backs. Even short visits here at home or the house cleaners coming in for an hour every couple of weeks causes PEM. The tachy stuff seems to be for several hours after aerobic exercise and going up stairs. Thanks for the responses. I see my cardiologist next week and will ask him and post his reply, if there is one.
  15. My neurogenic bladder has been acting up recently and I read on an interstitial cystitis website that drinking a glass of water with 1 teaspoon of sodium bicarbonate, baking soda, helps plus it has a high sodium content. No potassium but I eat a banana or two every day. Salt replacement also has a significant amount of potassium.
  16. Hi April. I'm sorry you are here but it's a good place to get support and information. Yes, gastroparesis and dizziness are commonly found in those of us with dysautonomia. Not all of us but many. There is no reason to be terrified, this is not a fatal condition just unfortunately, chronic. I suggest you check out the main page of this site and the 101 on this forum for more info on the many symptoms tied to autonomic dysfunction. There's a couple of books, the only one I can remember right now (brain fog is common too) is The Dysautonomia Project, that are extremely helpful. I tried 4 or 5 different beta blockers before I found one I could tolerate. It's a **** of a diagnosis but this forum is very supportive and helpful. You are not alone!
  17. Major swing in symptoms - Normal?

    Aside from *never* feeling well enough to run a marathon, yes. I can go from ok to dreadful in 60 seconds. Does that make me like a sports car? LOL
  18. Does she have a comorbid autoimmune disease? When I get stressed from physical or mental issues I get low grade fevers from undifferentiated convective tissue disease as a flare.
  19. How to stay positive

    I won't comment on the relationship issues because I have never been there. I will say one book, How to be Sick (I think) by Toni Bernhard really helped me accept my new circumstances. It's from a Buddhist perspective but is in no way in your face. She also has dysautonomia and other books. Another very helpful book for both you and your significant other so you can understand what you are going through is The Dysautonomia Project (I think I have the titles correct, brain fog today).
  20. Local Anesthesia and being Hyper

    You are correct about the epinephrine, my neuro told me absolutely to never have that. I have used topical lidocaine with no problems but don't know about injectable. Sorry.
  21. I've taken both clonidine and methyldopa. I found clonidine lowered my bp much more than methyldopa even at extremely low doses (1/4 tablet). It was harder to control dosage with such tiny amounts. Methyldopa feels smoother somehow and I can tolerate entire tablets. I take my first dose after I drink enough fluid and have enough salt to raise my bp enough that it doesn't tank it. About 2 years after I was diagnosed with hyper POTS my bp switched from usually too low to too high. Now it usually starts low and keeps going up throughout the day. I've had to decrease the fludricortisone which has helped. If you do add any meds it's always wise to track bp/hr for a few weeks. Feel better!
  22. Accommodations at college?

    Many of us do better with thigh high or full compression type panty hose (can't remember what the word is) than just socks. The heat is a problem. If you wear them it's uncomfortable, if you don't you have increased symptoms or faint. It is worth considering postponing for a semester until she is stabilized. Pulling a GPA back up is difficult and she will likely have increased symptoms with the stress of the change so starting stable will help a lot. Just my $.02.
  23. Accommodations at college?

    Each university should have an accessibility office. You could contact them now to find out what sort of documentation she will need and what services they offer. She should also see each professor and teaching assistant as soon as possible and explain her diagnosis, issues and measures she may need to take such as sitting or laying down suddenly. I was a professor before I got sick and was happy to assist however needed. Of course that doesn't mean all professors so accommodating. That's why the accessibility office is vital, they document everything and are aware of all services available on campus. I used to have a shocking number of grandparents die right at finals time, every semester LOL. It gets some people cynical, especially with a disease no one knows about she may have some simply not believe her. She should request a prescription for compression stockings from either her PCP or the cardiologist. The PCP would help her get fitted and receive them before she goes. Be sure to get the device that helps put them on. Juzo offers tie dye and colored ones that are much better looking than the beige ones. They help a lot with walking and standing. Of course lots of BIG water bottles and salt.
  24. Hrt And Pots Symptoms

    These comments are interesting. I was two years menopausal when full blown hyper POTS hit. My late 40s were horrible. Migraines that lasted for days, couldn't tolerate any estrogen. Now five years post menopausal and 3 years into POTS I started HRT a few months ago for gun reasons and it has helped me and the POTS. Not a whole lot but everything is much more stable much to my surprise. I guess how you react before and during menopause has no influence in how you react well into it.
  25. Hi. I'm trying to balance my need for exercise with POTS with my need to not overdo exercise due to autoimmune disease. I know we are all different and I typically need two days off after aerobic exercise (I do strength training and tai chi under PT guidance) but just wonder how anyone else manages this paradox? Thanks.