Kkb1216

Hi, Migraines. Blech. Depakote made me sleep a ton. I gained weight, was generally grumpy and didn't continue it for long. After 4 years of different cocktails, I've settled on pamelor as a Preventative and relpax as a rescue with a chaser of flexeril. When I have a multi-day migraine, and that doesn't happen often now, I take a steroid pack. I learned to watch my rescue meds. One neurologist had me on high doses of fioricet. This caused chained migraines. It was heck to come off of, but, for me, made a huge difference. I had a huge reaction imitrex, darn it. The biggest help to me was Preventative measures. I don't go anywhere without sunglasses. I carry those squishy ear plugs, and if we are at the movies or when I attended conferences, I used them to cut down on noise. I eat almost on a schedule. I don't let myself get hungry and start a normal headache that can spin up. I get in the dark as soon as I can. I meditate and use breathing techniques to release the stress I carry naturally in my shoulders and neck. I pay attention. I drop things, mess up numbers and letters and struggle to find words hours before a migraine. That let's me get in front of it. And honestly, getting in front of migraines has led to less medication use. Be patient with yourself. Everybody reacts differently. And it can take a while. Good luck! -K

I was told 100 oz. It's a struggle for me. I can do 64 oz without thought, but 100 oz makes me feel bloated which leads to nausea and that's a bad road. I track my liquids. I have to. I'm good at convincing myself I drink more than I really did. I have one glass of unsweetened iced tea a day. It's a treat. And I adore it. Cool bliss. Oh, I like the sweet potato idea. I love sweet potatoes. Yum. -K

Hi Katie, I had about the same jump in blood pressure. It's actually why I was put on it. To bring my blood pressure up for when I move. My heart rate did not change. Of course mine my heart rate is 136 sitting here browsing the Web on my tablet. I'll be thankful it didn't jump up. Two things I didn't expect on florinef: 1. A 6 day migraine that required steroids to end. Bleh. 2. One morning I woke up and thought my hands were a little weird feeling. I was achy and my body hurt all over. I weighed in (a normal weekly habit for me), and I had gained 12 lbs in 6 days... HA! I knew I'd been feeling off, but honestly hadn't noticed the edema. I can giggle about it now, but it was unpleasant. I remember my physician asking me to pay attention to headaches. It would be a clue my blood pressure was getting too high. It's great you are tracking things. If you feel off, just give your doctor of choice a ring. -K

Hi Sarah, Thanks for checking back in! I did get to ask all my questions. My neurologist admitted he had never treated anyone like me. He would like me to see someone else, a specialist. We called the one guy we found out about in our area, but we can't get in until summer. I cried a bunch, but am getting on with it now. The cardiologist and the neurologist approved some medication changes. I also have prescription for Ted stockings, although I Googled them. I just don't know. I haven't had the guts to find a place that does them yet. I need to put that on my list of things to get over. It's the thought of waiting so long to speak to a doctor that has seen this before that broke me a little. Other doctors just keep adding more meds because they don't really know, but they've got to do something. Healthy to pill popper seems so very extreme when I am not experiencing relief. Anyways, moving forward even if it's at a snails pace! -K

Hi, Please consider making a quick call to your doctors office tomorrow. They know all the meds you are on, and can speak to how you are adding salt and such. If it's worrying you, it's worth a call. I am a fast heart rater and a blood pressure dropper. When I was on a medication to help me retain salt, I was asked to keep twice daily records of my blood pressure (I have one of those machine do dads at home). I was also asked to note any headaches. I bug the heck out of my doctors. Some of these medications are extreme, and I like myself enough to call when I have a question. If I don't understand something, I'll either ask again, or ask for a nurse. Hoping you get the answers you need. -K

Hi, I started PT last winter. My physical therapist has me doing many things I can do sitting down. I have some weakness, so we are still slowly working on building back my strength. I do light weights for my hands and arms, and bands for tension on legs and feet. I do use a recumbent bike for 2 minutes. I also use an arm machine for the same two minutes (it looks like bicycle pedals for the arms.) Both of those are up by a minute from when I started. We don't do anything that changes my posture. I blacked out on the PT guy once, and we all decided not to do that set of exercises again (it was a squat type machine with a slight tilt). They keep track of my heart rate, and I signal if I'm not able to do something. Being honest with them has been key. I have some days that are better than others. I am generally better in the morning than I am in the afternoon, so I schedule things for when I am going to be able to tackle it. I will also caution that I am physically wiped out after a session. I normally have to have help after getting home, and will need to sleep and rest. Believe me when I say this is super aggravating, and I sometimes have trouble seeing the good in PT. All the doctors are in agreement that PT is a good thing. For now, I am just going to have to trust them. My PT has been fully covered by insurance thus far. I worked with my doctors to make sure before I started. That said, my PT office has many cash patients. Maybe check out some physical therapists in your area and see if there is one you can work with for a month or so to figure out your current limitations, and how to safely strength your weaknesses? I will admit to crying like a baby after my first session. While I knew I was weak, I had no idea how far things has deteriorated. It was very very frightening. Currently, we are looking for a place that I can do some water therapy. I hear it may be less taxing, and I will get back some strength more quickly. So if you haven't considered it, give it a thought. Wishing you good luck, -K

Hi, My HUTT said I didn't have POTS because my heart rate started in the 130's and only went up to the 160's while tilted. My blood pressure sunk like a anvil in a swimming pool. I had no idea I was ever experiencing that on an everyday basis. I just knew I was sick. So officially I have Neurally Mediated Syncope (an umbrella that NCS fits under now I think). I have a high heart rate no matter what happens, and my blood pressure falls when I sit or stand upright for too long. For fun, the universe decided I needed to be a sweaty mess, and have GI trouble too, because the blacking out wasn't enough Because my blood pressure starts normal and then drops, I have cognitive issues because my brain is literally not getting enough juice to swim in. To further confuse things, my current neurologist disagrees with the electrophysiologist and says I have both POTS and NMS. He also admits he's never treated anyone with either, so I have an appointment to see a specialist this summer. So really, in answer to your question, you can have dysautonomia that doesn't look exactly like anyone else's. And even Doctor's can be all over the map. I know it's super frustrating. Hang in there and keep pushing the subject matter experts for more information. Also, I apologize for all the pool and water references. I've been looking for a place that does water therapy this week. Good Luck, -K

Now you keep pushing. You are worth it. Keep in mind not all doctors, nurses and techs are very familiar with the variety of symptoms dysautonomia can manifest. For instance, I started pouring sweat in the minutes before my blood pressure plummeted during the TTT. I was not nauseous or dizzy yet. I was just cooking in a volcano. The nurse was very alarmed and got another nurse to come in who explained quietly everything was working as it should. Nurse one had never seen it before. She just didn't know. My own neurologist, who I have used for 5 years for migraines, said he had no idea how to treat me. He just doesn't have any patients with it. I say all that in hopes of starving your frustration. If you can, approach a different team of doctors and move forward. Keep calling, bothering, demanding. Be relentless. You are your own best advocate. Feel free to fire a doctor. I had a doctor tell me I was just stressed out. I gathered my things and left. Another cardiologist had difficulty returning phone calls in a timely manner... Like in the same week. I fired her as well and moved on. Be open. I thought I had a heart problem for 6 months. I figured I passed out because of the high amount of drugs I was on. Thankfully, my neurologist said enough, and sent me for a TTT. I expected nothing to come of it. Turns out we found an answer that had eluded 16 doctors over a year. And cry if you need to. Honor what you feel, then put it back in the box. Follow up by doing something with forward intention. Call a doctor, organize your medical paperwork, look for a support group. Just move! Hoping you find your way! I've found people super helpful on here -K

Poll worked fine! I begin to drop things, or trip over my own feet a day or so before a migraine. But I am typically clumsy, so it isn't the best indicator. I usually know something is coming when I can't think. I switch numbers around, or just can't complete a task correctly. I always notice after a few mistakes in a row and prepare. -K

Thanks guys! I am definitely going to write things down. I like the idea of keeping a notebook. I could slip it in the binder I am putting together with all my Dr. Visits and test results. None of these doctors seem to talk to each other, or have everything they need to look at. I'm learning to carry it all with me. I get apprehensive asking about limitations. I need to get over that. I have limitations, and I guess I am at the part in the process where I am still trying to deny this is going to be a lifetime change instead of a limited time of sickness. I'll need to work on that quite a bit. It would probably help my husband to hear things out loud. He would have me in bed and never leaving it again if he got his way. The falling and fainting has driven him nuts. He might wrap me in bubble wrap or something of the like. LOL I completely agree on the whole body approach over one symptom at a time. If these doctors had been talking to each other all along, we might have circumvented several months of waste and frustration. I can't say they are doing anything wrong really. It's how they are trained. But geez. This a learning process and I appreciate everyone giving me their tips and tricks! -K

Thanks for the replies. I don't really understand the diagnosis, and the test results are a rather cryptic read. I do need to slow down and remember to build a solid foundation of understanding about what is going wrong. I'm making a list with my husband of both our questions and concerns. I totally thought the tilt table test was going to be a huge waste of time. Goes to show how much I know! I just don't want to miss asking an obvious question. -K

Hi, New around here, but have enjoyed browsing for info. After 8 months of testing, a hospital stay, and several instances of passing out, I finally have a test result. I had an abnormal TTT with the testing doctors leaning towards Neurally Mediated Synoscope. What a mouthful. I see my neurologist Tuesday. I'm trying to come up with intelligent questions to ask. It's the first time we've seen anything other than inappropriate sinus tachycardia on a test result. I'm googling, but to be honest, this isn't a popular diagnosis. What kinds of things do I ask? What have you guys talked over with your doctor and found the most helpful? Appreciate any thoughts. -K