Rachel

I always felt best when I would drink 120 ounces or more in a day. Years ago I could drink as much as a gallon of water every day. Currently I physically can't drink more than about 64 ounces a day. This includes all of my fluids - gatorade, juice, coffee, herbal tea, and water. My doctor told me to drink as much as I can. If you can drink 3 1/2 to 4 liters of fluid a day, and if it helps, that's great! If you haven't already, you might want to add some salt into your diet to help your body retain the fluids. Rachel

When I am lying down I often get a feeling like I am rocking on a boat. Sometimes it is really extreme, and it feels like I am lying on a see-saw with my waist at the center axis. It feels like my head goes a foot or two in the air, and my feet go a foot or two through the mattress, and then it reverses - with my feet going up in the air and my head going way down. It is a very strange feeling! I have found that if I roll over onto my side the feeling usually goes away. For me, I am pretty sure it is just dysautonomia related. Rachel

When I get runs I put a drop of clear nail polish at the top and bottom of the run. That has usually stopped it for quite a while for me (30+ wears and washes). I put more on after a few months because it does slowly wear off in the wash. I put my compression hose in mesh bags and then put them in with my regular laundry and laundry detergent (Tide). I hang them up to dry. Rachel

Sometimes it is very hard to go to a doctor's appointment. The whole process is exhausting. Here are some things I do that make it a little easier. When possible, I prepare for the appointment as much as I can ahead of time (printing up directions, writing out questions for the doctor, and getting snacks and gatorated ready to bring along). I always schedule an afternoon appointment unless there isn't one available. I find it much easier to go in the afternoon. On the day of my appointment I don't bother to get all dressed up or put make up on. That takes too much energy. My husband drives me to the appointment, and he wheels me into the office in my wheelchair. If I am too tired to sit in my wheelchair in the waiting room then I just lie down on the waiting room floor. When they call me, I get back in my wheelchair, and my husband pushes me back. I don't stand on the scale for a weight because it is too tiring, and the nurses don't mind skipping the weight check. Once I am in the exam room I lie down on the table to wait for the doctor. If I am extremelly weak, I stay lying down even after the doctor comes in. I hope your son will be able to make it to his next appointment, and I hope that the doctor will be able to help him. Rachel

I hope that the test results will give your doctor good directions for treatment, and I hope that you will be able to see him soon. All the best, Rachel

Autumn, would your doctor allow you to do your infusions a little faster? Maybe that could fit into your schedule better. Currently I get one bag of saline over 2 1/2 hours. I use a Curlin pump, which I really like because it is so small. I put the pump and the bag of saline in a small black bag, and I can go anywhere with it. Usually I am just at home, but the small pump allows more flexibility with scheduling. I have been to doctor's appointments (and even to the zoo!) with my IV running. With a long sleeved shirt and the IV bag sitting next to me in my wheelchair, most people don't even know that I am hooked up to an IV. There have been a couple of times that I have left a peripheral IV line in for a day or two, and then I would do one infusion by myself. This has allowed a little bit of flexibility when I needed it. It is a pain to get a shower with an IV line in, though. It has to be wrapped so carefully to keep it from getting wet. Rachel

A cardiologist who specializes in electrophysiology can usually diagnose POTS. Sometimes a regular cardiologist or a neurologist will be knowledgeable in the area of POTS and dysautonomia. I hope you can find a doctor who can help you. Rachel

Hello Apache, Welcome to DINET. I'm sorry you've been having such difficulty finding a doctor who knows about and can treat dysautonomia. There is a Physicians List on the main DINET website. If you haven't checked that yet, you may find a doctor listed who is close to you. You mentioned that your B12 is on the low side. Even though it is still within the normal range, you might benefit from higher levels. My POTS doctor told me that he has found that many of his patients do better with higher levels of B12, and he prescribes B12 injections for them. I know you said that you have a bad reaction to vitamins and supplements. I don't know if an injection of B12 would be tolerated by your body or not, but it might be worht a try. You can also check out the What Helps page on DINET. There are many non-pharmaceutical options for treatment. Perhaps some of those would be helpful for you. Rachel

Hello again, Autumn. Here is an old topic that has been helpful to me as I have been weighing my options. Port Questions Rachel

Everyone reacts differently to meds, so I can't really say how your body will handle the change. I can say, though, that in my experience Seasonale has been helpful. I have been on both the brand name and the generic, and I didn't notice a difference between them. They were both good. I took Seasonale a few years ago for 6 months. Then my insurance stopped covering Seasonale (brand name or generic), and I tried another pill. It made me more tired, though, and I stopped the pill entirely for 3 years. A couple of months ago I had to go back on a birth control pill in an effort to help my body recover from the crash I had in August. My new prescription coverage does cover generic Seasonale, and that is what I am taking again. The generic I have is called Jolessa and is made by Barr Laboratories. It has been helpful for me to have steady hormones, especially since my ANS was really going haywire. I didn't experience any side effects going onto Jolessa/Seasonale. I wasn't switching from another bcp, though, so I don't know if that will make a difference for you or not. The only thing my doctor warned me about is being careful to pay attention to any pain that might indicate a blood clot. Because I cannot be very active, and I have to be in bed most of the day, I could be at a higher risk for blood clots caused by the pill. I hope the transition to a new pill goes well for you. Rachel

Hi Autumn, I have been getting IV fluids for a couple of months now, and it has been helpful. I get them three times a week. I have home nursing care, and a nurse comes to my apartment three days a week and starts a new peripheral IV line each time. When we started the IV infusions we were hopeful that I would only need them for a couple of months. However, it looks like I may have to do IVs long term. If that is the case then I will probably get a permanent line. I really don't mind getting stuck with a new IV three times a week, but over time it causes scar tissue build up. Already I have times that my veins are sore and hard to get a line into. Sometimes I get stuck three or four times before a line can be placed (and I have an awesome nurse who is great at getting IV lins in). A permanent line is not an option I like because of the risk of infection. There have been a few members here on DINET who had/have permanent lines and have ended up in the hospital with sepsis. Getting a permanent line definitely comes with risks, so weigh them carefully. If you are able to drink an adequate amount of water and gatorade, then taking in a lot of salt and/or Florinef may be a worthwhile, and less risky, option for you. For me, IV fluids and a permanent line are a "last resort" for treatment. I would much rather take medicine, and in fact I do take several medications. But even with medicine my symptoms have progressed to the point that I have to be in bed for about 18 hours a day, and I have to rest most of the 6 hours that I am "up." And that is all with IV fluids. Without the fluids I do worse. Another reason I may have to get a permanent line is because of my gastroparesis. My water intake has been more than cut in half due to gastroparesis, and I can no longer salt and fluid load like I used to as part of my treatment. If/when I do get a permanent line I think I will go with a port. A port can be completely de-accessed, and you can then get a shower once a week without having to carefully cover your line. The downside is that a port is put in and removed during surgery. Minor surgery, but surgery nonetheless. A PICC line doesn't require surgery, and it is more "temporary." It is a good option if you think you might only need it for a month or two. These are big decisions. I hope that you are able to find the information you need as you make decisions about your treatment. Rachel

Hi Lina, I was tested for lyme a few years ago, but the results were negative. From what I know of lyme disease the onset, symptoms, and progression don't seem to fit with mine. But thanks for the suggestion! Rachel

I did shake during transition in labor, but I don't have hyperadrenergic POTS and am not sensitive to adrenalin. Shaking during transition is normal, and isn't a cause for concern. Transition in labor is a very intense time, and it can cause all sorts of things like nausea, vomiting, shakes, tremors, sweating, feeling hot or cold, and more. Every woman is going to be a little bit different in how she feels and responds to the transition phase. Unless someone's symptoms were dangerously severe I don't think an OB would have reason to suspect an underlying health issue or autonomic dysfunction. Rachel

Hi Tara! Welcome to DINET! I'm glad you have decided to start posting and joining in our conversations. Here is some background on ProAmatine (generic name, midodrine), Shire, and the FDA. There was a big issue a few months ago. The FDA was going to withdraw midodrine from the market unless Shire conducted more tests to prove that the drug is effective. Shire said that they would discontinue manufacturing the drug. Midodrine doesn't bring in much money for them, and it wasn't financially worth it for them to conduct the studies. Doctors, patients, and friends all wrote, called, and emailed the FDA about this issue. There were so many calling and submitting comments on their website that we clogged their phone lines and froze up their website! In the end, the FDA decided to allow midodrine to continue to be manufactured while they work to obtain the data they need proving that the drug is effective. The last I had heard from Shire was that they changed their minds and had decided to continue to manufacture ProAmatine. You can read about that here:Shire Does a Turn Around. Apparently they changed their minds (again!) since they told you they aren't making it anymore. Here is the most recent information that was posted on DINET regarding the FDA and midodrine: More on Midodrine and the FDA. Regarding generic versions of midodrine - they are worth a try. In my experience some work better than others. I have tried three generic brands: Mylan, Global, and Apotex. Mylan was not very effective for me at all. Apotex was definitely better, but the Global midodrine is the best. I currently take 15mg of Global midodrine, and it works well for me. Whenever I refill my prescription at the pharmacy I always request the Global brand, and my pharmacy has been great about getting only the brand I need. If they are sent the wrong one, then they return it and get the Global. I hope you can find a brand that works for you. Rachel

Hi Neshema, thanks for asking how I'm doing. I've been wanting to post an update for a while, and your post was a good reminder to me. It has been hard for me to know what to say in an update. There is still so much that we don't know about what has been going on with my dysautonomia this fall. I had a huge crash, but we don't know why. There aren't any test results that have given clear answers. It was good for me to read back through this topic, and especially to read my frist post. It seems to me that I have barely improved at all. I don't notice an improvement in my health from week to week. However, as I look back month to month, and as I read what things were like in August and September, I can tell that I have improved some. I am definitely not back up to my previous baseline, but I am at a more functional level. My cognition has improved. I am not struggling with brain fog as much as I was. Blood flow to my brain is better. I no longer feel like I am on the verge of fainting even while lying down. I am still more weak than I should be, but I can move around the apartment again, and my muscles don't give out when I go to sit down. My sensitivity to sounds has improved, and I'm so glad we don't have to talk in whispers anymore! I still have a long way to go, though. I'm unable to get out of bed before noon most days. I have to be in bed for about 18 hours a day (better than the 22-23 that it was!) I rarely leave the apartment, and when I do it is only with help. Minimal activity wears me out. I still have more difficulty than normal with email, talking on the phone, writing letters, and typing posts. It is hard to think clearly enough for long enough to get it done. I still need full time help here at home (to take care of myself and our children), so we're still trying to figure out how to make life work financially and physically. It's challenging. In the past few months I have seen/spoken with a lot of doctors and had a lot of blood work done. The only thing that came back showing a problem was my vitamin D. It was low, but just barely. I didn't have my vitamin D checked until September, and by that time I had been indoors for a month. We live in the corner of a rock wall and woods, so we get very little sunlight in our apartment. I think my D was just low because once I crashed I was bedbound/homebound and never saw the sun. All of the other tests came back normal. From what we can tell, the crash just seems to be purly dysautonomia (or mito) related. Something caused me to crash, and my ANS just went haywire. It really messed me up. At the time of the crash I had some really weird symptoms start up too. My skin has been peeling, especially on my palms. It isn't dry and peeling, it is normal and peeling. At times my palms have been sore because too much skin had peeled off. My face became more oily. My body odor increased. Overnight my GI tract switched from very slow motility to diarrhea. For almost 4 years I have had to take Amitiza or Miralax to tell my guts to move. And then suddenly I had the runs. I've seen several doctors, and they are all baffled by the symptoms. Nothing appears to be wrong other than dysautonomia. It was really good to talk to Beverly. She did change a couple of meds (added a migraine medication and IV saline infusions). She tried to start me on Octreotide and home oxygen, but my insurance denied them both. I have seen a local neurologist and gastrointerologist. They have run neurological tests, an EEG, and bloodwork, but everything is normal. I will be seeing my mito specialist in January. They weren't able to get me in any sooner than that. However, they did go ahead and start me on a mito cocktail. The CoQ10 has been beneficial to me. I'm taking 800mg a day. My local cardiologist ordered IV saline 3 times a week, and that has been helpful. A nurse comes to my home three times a week and starts a peripheral IV for the infusions. My cardiologist also recently started me on florinef, but today I had to stop that med. It is causing too much intraocular pressure, and my eyes have been hurting for 5 dyas now. I'm disappointed that I can't continue to take it. I really noticed a difference after being on that med for two weeks. It was my hope that I could just do florinef and be able to stop the IV infusions, but I think I'm going to have to continue with infusions long term. My neurologist is monitoring my migraines and sensory overload. He started me on Elavil, and that seems to be helping with the sensory overload, but it also makes it harder for me to sleep. My GP started me on mega doses of Vitamin D to get my levels back in the normal range. I think that might have helped a tiny bit. The most helpful things have been the weekly saline infusions, CoQ10, and lots of rest. I still have a long way to go to get back to my previous baseline, but I am hopeful that I might see some more improvements. If not, I will get used to my new normal and keep enjoying the life I have been given, challenges and all. We still aren't sure what caused the crash. I think it is probably several things: - the long, hot summer and going in and out of the heat too much. - pushing my body too hard for too long. - Vitamin D that was on the low side to begin with. - difficulty sleeping. - gastroparesis not allowing me to take in enough fluids and salt daily. - the normal ups and downs of dysautonomia. - and very likely a mitochondrial disease that is getting worse over time. That was a very long answer! I hope it isn't too much to read! Thank you to everyone who has been thinking of me and supporting me during this difficult symptom flare. Rachel

For me, it is actual weakness. When I feel weak I have a hard time opening a jar, walking, holding something heavy, etc. There are times that the weak feeling is more intense than my muscle weakness actually is, but real muscle weakness is always there too. For example, sometimes the muscles in my legs feel like they are going to give out (even while I'm laying down in bed), but I can still walk for 50 feet or so before my legs actually give out. Rachel

I sometimes get really dizzy when I lie down on my back. It gets so bad at times that I feel like I am on a rocking boat. I find that changing my position, especially turning over onto my side, is helpful. Rachel

Hi Sara, It is normal to get a tingly feeling on your head/scalp while taking Midodrine. This side effect may go away or lessen over time. You said that you had less fatigue while on the Midodrine. Does that mean that you did more on the day you took it? If you were more active than normal that could explain the crash that you had at night. I know that when I have better days I will push myself to do more than I usually do, and then I crash come evening because my body isn't used to doing so much "work." I don't always take midodrine with a full glass of water. My medicine bottle has never said to do so. There are times that I haven't taken it with more than a tiny sip of water, and I've been fine. I hope that your body is able to adjust to the midodrine, and I hope that it will help you. Rachel

Sarah, I buy my compression stockings from ameswalker.com. I have always had a good experience with them, and their prices are much better than you find in most pharmacies. Also, if you get on their email list, they will send you emails when they are having sales. The downside is that sometimes their site is hard to navigate. Here is a link to the It Stays adhesive that you can use to help keep your thigh high stockings up. Rachel

I have never been on both for an extended period of time. 15 years ago I was on both for about a month. Currently I am taking both again. I have been on Midodrine for the past 4 years, and my doctor just recently added florinef to my med combo. My doctor didn't mention anything about the risks of taking both together, so I appreciate the heads ups. There is a history of glaucoma in my family, so this is something I'll need to pay attention to. This is the information I found on Drugs.com. MONITOR: Although midodrine is often used with fludrocortisone (with or without salt supplementation) for the treatment of orthostatic hypotension, this combination may lead to excessive increases in blood pressure and intraocular pressure. Glaucoma may be aggravated in some patients. MANAGEMENT: Caution is advised, especially in patients with ocular diseases. Blood pressure and intraocular pressure should be monitored during concomitant use. Prior to initiating treatment with midodrine it may be prudent to decrease the dose of fludrocortisone or decrease the patient's salt intake. From Drugs.com Interaction Checker

Compression has been helpful for me. I am able to sit and stand longer while wearing compression, and thus I am able to do more and get more exercise than I could otherwise. For me they have become "less effective" over time only when the compresison stretches out too much. They do need to be replaced every few months depending on how often you wear an individual pair. I can tell a big difference when I throw away my old compression and put on new compression. I can't wear compression hose during the hot summer months anymore. The extra warmth that compression hose gives outweighs the benefits for me. Even when I can't wear the compression hose, I can sometimes still wear my compression shorts. I just can't take the heat on my legs. Rachel

I'm so sorry. Sleep deprivation always makes my symptoms flare up, and the longer I don't get adequate sleep the harder things get. Sleep is so important! I'm sorry your doctor hasn't been more helpful. For what it's worth, melatonin has been very helpful for me. I take 3mg every night. It helps me to sleep, but it doesn't make me groggy in the morning like other sleeping pills do. It might be worth trying. When things get really bad for me, I do have a prescription of Ambien that I take as needed. I can't take it nightly because it makes me too groggy in the mornings/early afternoon. But if I have been sleep deprived for too long, the morning grogginess is much preferred to the not sleeping at all! My cardiologist is the one who called that prescription in for me when my POTS flared up so badly and I desperately needed sleep. Maybe you have another doctor besides a PCP who would be willing to give you a prescription for a sleeping pill? I used to take Sonata in the past, but found it to be a fairly short acting sleeping pill. It would last for about 4 hours. It was perfect for when I woke up at 3 or 4am and couldn't get back to sleep, but if I took a Sonata when I first went to bed I had a hard time getting a full nights sleep. The pill just didn't last that long. From what I remember my doctor saying, Sonata is a sleeping pill made for insomniacs who wake up really early in the morning and can't get back to sleep. It helps you to sleep for just a few more hours, but then still be able to get up in the morning. If it is something you are taking when you first go to bed it may be that you just need a longer acting sleeping pill. I hope you can find something to help, and I hope you can sleep well tonight. It is miserable being awake all night. Hugs, smiles, and sleeping dust, Rachel

I think we've all been there. I have missed lots of doses of medication. My main problem was that I would forget if I had taken my medicine or not. A few years ago I got pill boxes, and those have helped tremendously. I never wanted to get pill boxes because in my mind it made me feel old or something. Eventually I realized that I really needed the pill boxes, and I'm so glad I gave in. They have been a huge help in remembering my meds. They also make it so much easier to take my medicine. I fill my pill packs on Sunday evenings, and then I'm set for the week. Before I was always opening each bottle every time I needed medicine. Now I just have to open the lid of a pill box, and all my meds for my morning or evening dose are ready to go. The only prescription medicine I take regularly throughout the day is midodrine. I take it every 3 1/2 to 4 hours. Sometimes every 6 hours. It all depends on when I remember and when I'm not napping. The main thing with midodrine is that you don't want to take it any closer together than about 4 hours. It is okay to spread it out farther than that. For example, if I'm napping, I don't bother to wake up and take midodrine. I'll just take it later, even if it is 6 hours since my last dose. My next dose then gets pushed back by two hours also so that I'm not taking midodrine tablets too close together. Missing a dose of a beta blocker and midodrine probably isn't something you need to be too concerned about. You may have some increase in symptoms, especially hr and bp related, but it won't hurt you. It will just be uncomfortable. Some people set alarms on their watches or cell phones to remind them to take their medicine. I have done this once or twice when I knew I would REALLY need my midodrine, but also knew that I was very likely to forget to take it. Rachel

According to the ADA, you are not required to disclose any information about your disability during the application and interview process. When you reveal your disability and request accomodations is up to you. 16. Do I have to tell the employer during the application process that I might need an accommodation to perform the job? No. The ADA does not require that an applicant inform an employer about the need for a reasonable accommodation at any particular time, so this information need not be volunteered on an application form or in an interview. Determining the best moment to tell a prospective employer about the need for reasonable accommodation on the job is a personal decision. Sometimes, applicants are not aware they may need a reasonable accommodation until they have more information about the job, its requirements, and the work environment. Some applicants choose to inform an employer during the application process after they better understand the job and its requirements. Others choose to wait until they have a job offer. (From The U.S. Equal Employment Opportunity Commission. Full Q&A article found here: Job Applicants and the Americans with Disabilities Act) I'm glad you've been doing better lately. I hope you get the job! Rachel