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Everything posted by nomdeguerre0850

  1. Wow! That's a lot of medication. Are you monitoring your blood pressure to make sure it doesn't get too high, especially when you're lying down? t'm taking 600mg Northera 3 x day, but stopped taking midodrine when I started on it. Midodrine worked for me, but I would crash when it would wear off. It was really whipsawing me about, and I was even in a wheelchair. I find Northera wears off much more gradually and that has enabled me to get out of the wheelchair. Florinef didn't help me. I actually have a port and administer 1 liter of saline IV every morning.
  2. My Mayo doc started me on 2.5 mg of midodrine three times a day(tid), to be titrated up. Even this small dose really made a difference for me. Increased to 5 mg tid, for a while and then to 7.5 tid. The goal was 10mg tid. At 7.5, I had some significant spikes in bp, so I went back down to 5mg. I was on that dose until a month ago when I discontinued it to try Northera. What a difference. Midodrine was very helpful, but seemed to only last 3-4 hours, and I often felt "whipsawed" by the changes in my bp. The Northera seems to put a floor under the bp and wears off more evenly. It's only been a month, but so far it has made an enormous difference in many of my symptoms, not just the bp issue. Besides noting changes in how you are feeling, it is very informative and helpful to monitor your bp lying and standing. It gives both you and your doctor some concrete info that can be very helpful in evaluating your response to any drug that affects your bp or heart rate.
  3. Sunshine, I had the same experience as you did. I'm not up five plus time to go to the bathroom. It is now consistently only once a night. The reasoning you got was similar to what I was told. Kidneys are retaining more fluid in the body. I'm not sure I actually understand how it works, but I guess I don't have to.
  4. Great explanation Sunshine. I also have to take bp manually. I wish there was an automatic bp monitor that could actually pick up readings as low as 30 or 40 without giving an error message. When my bp is that low, I feel so crappy that it's hard to take a manual bp before passing out.
  5. I like Sunshinegirl's approach. :-) I guess I'm a bit similar. I do the research and bring in an article from a scientific journal in which I've highlighted a few pertinent sentences about what I want to try. I let him/her know the reasons I want to try it and then listen carefully to what the doc has to say. Sometimes they bring up something I hadn't thought about that would make my suggestion a bad idea, or they may wish to try an alternative first. We are a team and share ideas. I first tried IV saline with a naturopathic physician. My husband was with me and was astounded as he sat and watched my color change. I was more surprised when I could stand up again for a few minutes and also felt so much better. I went to my primary doctor with my article, recounted my experience, answered some questions and we figured out the logistics to do a trial. Now, three years later, after three PICs (each replaced after 1 year), I have a port and am still administering 1 liter of saline every morning. I started droxidopa (Northera) about a month ago and feel so much better, I'm want to try decreasing and maybe even stopping the IVs. One step at a time. I don't want to tempt fate and crash again. I'm already out of my wheelchair. Good luck working with your doc. When you have mutual respect with your doctor, it is transforming.
  6. Newbie, What country do you live in? When I heard droxidopa would be called "Northera" in the USA, I thought it was a silly name. Now that I know has different brand names, I am going to go back to calling it droxidopa. :-) Because this forum is international, I think I'll cause less confusion. I agree that I love this medication. I also had a hard time believing it made such a difference. Thank you for sharing that you are still loving it after two years. That's so encouraging. Have you ever run out and had to be without it? Did all your old symptoms return? Do you still sometimes feel the ebb and flow of dysautonomia, but with much smaller fluctuations? I want to know as much as you are willing to share. Thank you for your post.
  7. I've been on Northera for about a month. I had an interruption of 1 week because the pharmacy didn't read the prescription that stated we were going to titrate the drug up. They therefore didn't order the refill on time. It takes them a week to get it in from Lundbeck. That turned out ok because it gave me an opportunity to see the difference it made. So far I love this med. I am taking 300mg three times a day. It seems to put a floor under my blood pressure and maintain it much more evenly than midodrine did. When the midodrine would wear off, I would frequently crash. I also had spikes in bp with midodrine, (150/110...much better than when my bp would drop in the am to 30/???), but my bp supine has stayed around 120/70!!! I am so excited. I overall have felt better than I have in three years. I am out of the wheelchair, my brain fog is much better, my startle response is a little more toned down, and I actually seem to have more energy. I'm cautiously optimistic, because I certainly have been disappointed before. The question about long term efficacy is because the only trial I could find only lasted two weeks. It's not that Northera isn't effective long term. It's just that they don't know yet. As Lundbeck tracks the response of patients, they are getting the clinical data on patients who are using it in the real world. Although it was used in Japan for over 20 years, I can't find the studies/trials they did. Maybe they are only published in Japanese. It can be very expensive, however. Pricing seems weird. Kaiser paid $1706 to Lundbeck and I had to pay $376 for 90 capsules. (25% as a Tier 5 drug). But on the internet, I see Wal-Mart, CVS, sell it at their full retail price for $523. Working on that whole issue, but right now I'd sell all my possessions to be able to stay on it. More will be revealed.
  8. My bp was dropping that low and even into the 30s. Midodrine and IV saline worked the best, but I still had many symptoms. When the midodrine wears off, however, it seems to wear off very quickly and I often crash. I just started on droxidopa which was approved in the US last April but has been available in Europe since about 2006, I think. It seemed to be working well for a couple weeks, but then I ran out, and the pharmacy had a hard time getting a refill. I just started again yesterday and am cautiously optimistic. But...I've been hopeful before and been sorely disappointed, so I'm trying to manage my expectations. Meanwhile, I'm still in my wheelchair because of hypotension. If the fludrocortisone isn't working, and it didn't for me, your GP should at least be willing to try something else now rather than months from now. With bp that low, it's obvious that you need to have some sort of intervention. I'm assuming you have upped your salt intake, because fludrocortisone needs enough sodium to help retain fluid in your system. Besides compression stockings, (they should be at least thigh high and 30-40 pressure--a bear to put on!), drinking salted water helps me. I dilute 1 tsp of sea salt in 1 liter of water which makes it roughly isotonic, and I drink at least2 liters a day. It seems to stay in better with the salt and I'm not constantly in the bathroom. Is your GP willing to think about IV saline? I also have the head of my bed on 6 inch risers. An abdominal binder helps some people, but made me nauseated. Sorry this is somewhat disjointed, but I'm a little foggy today. Just keep reading in this forum and keep trying new things. It can be helpful to keep a log of what you're doing to see if you can figure out what works a bit and what doesn't. I had to learn to look for subtle improvements and not expect one thing to "fix" me. Hope you find some things that can help you get some control back.
  9. Back in 2008, there was a thread about difficulty getting a bp reading on an automatic cuff when our bp dropped too low. I have this issue and know I have to take my bp manually when systolic is below about 80. I was wondering if the technology has improved in the last 6 years and an automatic cuff is now available for those of us with really low bp. How low can yours read before you get the error message?
  10. I put one teaspoon of sea salt into a one liter bottle of water and keep it in the refrigerator. This equates to about 0.9% sodium chloride, which is isotonic. Although the salt does not dissolve immediately, it will after it sets a while. Then I only need to do a quick shake. This is also about 50% of what I drink in a day. I also get a liter of IV 0.9% sodium chloride every day. Adding a banana or two has managed to keep my electrolytes in balance. My neurologist suggested coconut water, but it's expensive, trendy, and I have my doubts it would be any better than what I am currently doing. And you're right, it does take some getting use to, but I've been drinking salt water for a couple years now, so regular water tastes funny to me.
  11. I also take the lead in treatment options/suggestions with physicians I work with. Although a lot of research is being done about dysautonomias, many physicians are not familiar with any of it. With so much research and new findings in all the different medical fields, it's not surprising medicine is fracturing even more along specialty lines within specialties. I take Ivabradine 5mg bid and it helps with my tachy and OI. Unfortunately it is not yet FDA approved, so to get in in this country I had to find a physician willing to write me a script so I could import it from India/Canada. It definitely helps me. I also had bad results with beta blockers. Ivabradine has been fast-tracked and given priority review status by the FDA. (I think in April last year). Since it's been used successfully in Europe for about 8 years, hopefully it will be approved quickly like Northera. I too have basically given up on curing, but am slowly getting better control of my symptoms. Baby steps and appreciating each little gain. Good luck in your quest for answers and potential solutions.
  12. No side effects that I'm aware of. It's often hard to know what's going on or what's causing what because of the myriad of weird symptoms that get worse and then a bit better and then a bit worse on and on and on....
  13. I went through a company in India who also required a prescription. Ivabradine has and continues to help me. I've been taking it for about two years. The difficult part is getting a physician to write a prescription for a medication that is not FDA approved and also for POTS, which is an off-label use even in Europe. I know it has been fast tracked by the FDA and given priority review, I do not believe it has been approved as yet. We should hear the herald of trumpets in our community when this happens.
  14. I have a port (having had 3 PIC lines for 3 years), and give myself a liter of saline first thing every morning. Occasionally I'll run a second liter if I start crashing in the afternoon. This has helped a lot with most of my POTS symptoms. I''m also on midodrine, but am going to be trying the newly approved droxidopa, (Northera), which was just approved in the USA 2014, and became available in August.
  15. TCP, Good luck in your hunt. I certainly know how frustrating and exhausting it is to try to help doctors figure out what is going on. It's such a weird disease and presents in so many different ways. I've gotten so discouraged I'm to a point I don't care what they call it anymore. Just help me treat the symptoms. They've got my headaches under control with botox injections. I've just ordered a wheelchair to help me save my energy, get around more easily, not have to squat down or sit on the floor if someone stops me to "chat," and be able to take an elevator that stops on more than one floor, etc, etc, etc. I'm hoping it will help me get out and about a bit more. I hope you get some answers soon that will help to better guide your treatment options.
  16. This is going to sound off the wall, but twice I have had another patient's results mailed or faxed to me. I've learned to always check the name on the test to be sure the results are actually mine. I also had a physician tell me I did have a dysautonomia, but not POTS. My understanding is that, depending on the doc, some are reluctant to say it is POTS until all other possibilities are ruled out, and they have nothing else to explain your symptoms. If you passed out during the TTT, that IS syncope. If you got lightheaded, tacky, clammy, etc, but didn't actually pass out, they will usually say you have presyncope.
  17. I tried mestinon for about 2 months and had high hopes. It didn't seem to help me at all, but neither did it give me any side effects. I tried it by itself as well as with florinef. It seems we have very individual experiences with meds, and it ends up being a "try it and see" if it helps the symptoms. Wouldn't it be lovely to get something that actually cured and didn't just treat symptoms. But I'll take whatever help be to function a bit better. IV saline, midodrine, and buproprion have each helped me a lot.
  18. I diagnosed myself after a lot of internet searching and reading a lot on this website. I brought the article "The Postural Tachycardia Syndrome: A Concise Guide to Diagnosis and Management," ( http://www.dynainc.org/docs/potsconciseguide.pdf) to my appointment as well as a chart I had created with my bp and pulse readings supine, sitting, and standing at 1", 3", 5". Even though this was in the earlier days of my illness, the data was pretty dramatic and POTS fit most of my symptoms. Docs like to have objective, observable data which can make the diagnosis of dysautonomia difficult and frustrating. Prior to my charting my own bp and pulse, I don't think I'd ever had my bp measured standing up. Since most of the symptoms are not observable, especially in the earlier stages, docs can easily miss it if they aren't familiar with it. There is a lot more awareness today than there was ten years ago and a lot of research is being done. Hooray. I would suggest tracking and recording your symptoms, especially the measurable ones like bp and pulse, and bring it with a copy of this article. I used to take this one with me to every new physician I saw to help them understand what was probably going on. In Hawaii, I couldn't find a doc at that time who had even heard of POTS. These two items really helped them to become partners with me to help me start to manage my symptoms. I was also referred and went to Mayo Clinic in Rochester for autonomic testing. The referral came as a direct result of sharing this info. Good luck. Diagnosis is a big part of the battle and very validating.
  19. The last question didn't have an answer I thought fit either. I've exercised for years but stopped except for my PT twice a week when I got sick. I still think exercise is critical, but more for an attempt to arrest deterioration, rather than improving my symptoms. I try to do 10-15 minutes on a Nu-Step, (sort of a recumbent elliptical), on days I am able to be upright. I do not overdo because I do not want to pay the price.
  20. Northera, aka droxidopa, was approved by the FDA last April and just became available to be prescribed in the US yesterday. It is the first drug specifically targeted for orthostatic hypotension. Treating hypotension with midodrine, as most of you already know, is an off-lable, although often effective, indication. Before, droxidopa was only available, I think, in Japan. Ivabridine is another promising drug that is in use in Europe and often used off-label to treat POTS. It decreases heart rate while maintaining cardiac contractility. (I couldn't tolerate a beta-blocker, but the ivabradine has been very helpful). FDA has fast tracked and prioritized it. Hooray! Much of the progress being made in treating dysautonomia is due to some dedicated research champions, the staff and volunteers of Dysautonomia International fighting hard for us, and a lot of work and effort by patients reaching out to each other and doctors to help spread the word. (www.dysautonomiainternationl.org) We're making some progress!
  21. Before I was diagnosed and started taking midodrine, I remember sitting quietly in a meditation meeting. I noticed my heart started pounding and beating faster and faster. I decided if it went to 110, (my resting pulse is usually in the 60s), I would leave the room and find a place to lie down. I suddenly thought of folding my legs and putting my feet on the chair by my bum. I could actually feel my pulse rate falling and the pounding decreasing. Since then, when I sit i often sit like this, or in semi lotus position, and even sometimes on the floor. I definitely do much better when my legs are not in a dependent position. Good to know this is common to potsies. The weirdness that surrounds this disease can be very disconcerting.
  22. Old topic, but as a newbie, and since I've had a daily headache for 2 1/2 years, I thought I'd read through the posts. Having not had anything really successful other than hydrocodone, and that only marginally, my new neurologist referred me to another neurologist for consultation to see whether botox injections might be helpful. I had never had headaches in my life until I started with all the POTS symptoms. Also, because the headaches seemed to be generalized over so much of the head, I had assumed the botox wouldn't be appropriate. Two days ago I had twenty little botox injections around my head. From a daily headache between 3-7 on the pain scale to a mild headache between 1-2, I'm nothing short of amazed. And she said it would take 2-4 weeks to experience the full effect. Since my hopes have been dashed too many times, I'm trying to manage expectations. But so far so good.
  23. When I was trying to figure out what was going on before I was diagnosed, I did the "poor man's TTT" and recorded the results several times a day for a month. I took the chart I had created with all the data as well as one journal article that explained POTS very succinctly. Doctors love objective data. This is when the pieces finally started falling into place. Every time I went to a new doc, I would bring an article and have to educate them about POTS,except at the Mayo Clinic. I'm in Honolulu, and could not find any physicians who had even heard of POTS, with the exception of one...and he retired the week after I saw him. I would suggest you track and record your symptoms in a way that they can see what's happening and bring this with you to your appointments. It can really help them see what is happening and keep them better focused. Otherwise, I found that all the appointment time could be used answering questions that had no relevance. Getting diagnosed can be a real challenge.
  24. Careful now, I'm sure there's a fair number of us "elderly" folks here. ;-) I was dx by my doc and myself at the grand old age of sixty. When I went to the Mayo Clinic MN later that year, I was told I couldn't have POTS because I was too old. My pulse rose 50-60 bpm within ten minutes of standing. I also failed two TTT there, one in the neuro dept and one in the cardiac dept. They seemed to want it to be cardiac based instead of neuro, but could never find anything wrong with my heart. My only diagnosis from them was neurogenic syncope. To me that's a symptom, and only one of many. But, since there currently doesn't seem to be any cure, what we seem to focus on is controlling the symptoms as best we can. This forum has been extremely helpful with that and also keeping up on current research. Thank you for all your sharing of individual hints and things that work and don't work. It helps to know there are other options to keep trying. I've found that in the last three years as my health continues to worsen, you have provided new ideas to try when I need to add to my arsenal of tricks.
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