jvherenow

I get saline infusions 3x/week but I'd rather not do this for the rest of my life. What meds do you use that help you hold on to fluid? I can't tolerate florinef. I currently take propranolol and midodrine which both help a ton...but only when I have just had saline. 48 hours after an infusion and I'm in bed :*(

@Pistol What is LRR and NSS? I'm trying to find ways of holding on to the fluids so I don't need saline forevah. I don't tolerate florinef.

I started Iv fluids in February and it has made a dramatic difference. I do not have a port and access through my hand veins. I'm usually much better for about 48 hours after 1L over 2 hours. Sometimes I also get irritable, jittery after an infusion but not always. If I do, it lasts several hours. We slowed the infusion down from 1.5 hours to 2 hours to try and help with that. The plan is to move to home infusions, 3/week. But it is very difficult to get this set up through two different VNAs (one wouldn't do it because I don't have a port).

right now I get 1 L twice a week. I want to increase to 3 times/week. My neurologist does not want me to keep needing the fluids forever but we haven't found anything else that is as beneficial yet. So, there is no plan to stop at present.

I've been off and on pyridostigmine for 2 years. Sometimes it helps dramatically. Sometimes it makes it worse. A couple months ago, my doctor added in propranolol and then midodrine. The midodrine is awesome. I've since stopped the pyridostigmine. I also started IV saline infusions twice a week. Overall, the POTS is less exhausting most of the time with this regimen. It still rules my actions, though, but I get out and about much more.

I also have vocal chord dysfunction but I also have episodic ataxia. My speech is only weird when the ataxia kicks in. I haven't tried speech therapy yet.

I use magnesium oxide. I take two 750 mg tablets mid morning and another two with lunch. I have chronic constipation and this keeps thing regular. Magnesium citrate was a bit to aggressive and the other magnesium types didn't move things along.

I also have trouble swallowing. I just did a barium swallow exam last week and they found decreased esophageal peristalsis and decreased transit time. So, my esophageal muscles are not working typically...like they're drunk on a Caribbean beach somewhere or something! The radiologist thinks this could be caused either by the small fiber neuropathy or by episodic ataxia (I have both). In the ataxia groups, people have found swallowing PT helpful. So, I'm going to ask for a referral to get some of that. It's available from only certain speech language pathologists (it's a unique protocol you need training for I've heard). I recommend you talk to your primary care doc. S/he'll likely refer you for a barium swallow and endoscopy. We did the barium swallow first since he was not expecting an obstruction but instead was expecting a functional issue (caused by neurological dysfunction). Good luck!

I'm in the hospital right now getting my saline infusion. I do not have a port and have no problem with getting access through my hand veins. I've been doing it since February and it makes a huge difference. I usually get a good 48 hours of improvement from each infusion. I usually take 1L over 2 hours but I may move to 2.5 or 3 hours...sometimes the faster rate is a bit agitating. Sometimes I need 2 L over 4 hours. My neurologist put in orders to move me to home infusion but we have faced many obstacles to that with VNA (I'm in Massachusetts) so it is still not set up. He does not want me to get a port because of the risk of infection and blood clot. My dysautonomia began with a pulmonary embolism that was provoked by my hip replacement. My PE symptoms were indiscernible from the POTS symptoms, shortness of breath tachycardia, chest pain, dizziness, feeling out of sorts. However, I usually don't get a HR of 130 sitting down which is what happened with the PE. Of course, I'm medicated now (propranolol and midodrine) so my heart rate is generally lower. So, I'm not sure I'd know if I had a PE now. If it were large enough (my previous one was small), I think you would definitely know! I would love to have a port so that I could be independent. I hate being in the hospital so much, being reminded that I'm sick all the time. Going to the hospital and making the long, dizzy walk to medical day care is like running the gauntlet; it is physically exhausting on the way in but I'm all chipper and capable on the way out, so it's a trade off. I would definitely try peripheral access to see how the saline makes you feel before going for the port. I recommend trying it for a full month if your veins allow; this condition is so variable, we need time to see if any difference we experience is due to a new treatment or the inherent variability of dysautonomia. Good luck!

I see Dr. Farhad at Mass General. He's in Dr. Oaklander's group and I like him, especially if you've already been diagnosed with SFN. He's given me a lot of options that I've read about but that no one else was offering. There are people at Beth Israel in the autonomic neurology department who are supposed to be good. I first saw Dr. Novak at Brigham and Women's. He diagnosed me with POTS and small fiber neuropathy. However, when I went to see him for treatment, he was bereft of options, very impatient, and not really interested in helping, it seemed. I then transferred to Dr. Farhad at Mass General but it took me 10 months to get the appointment. So, I recommend you start with someone in Dr. Oaklander's group at Mass General, so you don't have the double wait time (like I had first to see Dr. Novak and then to transfer). Good luck!

While you wait, you might try adding some electrolytes to your boatloads of water intake. I like the nuun hydration tablets (watermelon tastes best I think) and the Vitassium tabs. Also, take a methylated vitamin like Emeral Labs (https://smile.amazon.com/gp/product/B005LQ973E/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1) in case you have the MTHFR bad variant (like me). It shouldn't hurt and it might help. I really recommend seeing an integrative MD in addition to the specialists. I have had a dramatic improvement since starting with one six months ago. She has me on boatloads of supplements but I'm not complaining because I am so much better than when I started! Good luck!

I had to go to Denver last year when my symptoms were still really rough and that trip was insanely difficult. The altitude hit me hard. (I have POTS/small fiber neuropathy).

I have POTS/small fiber neuropathy and I also get tremors, mostly just right sided, and much milder than yours but they can last hours. I'll usually have pretty significant brain fog during those times. I'm able to talk but my voice is usually quite breathy and sounds like an MS voice. I've seen neuros and they haven't been able to diagnose anything. The tremors have become less frequent since I started seeing an integrative MD. She's got me on all kinds of supplements and prescriptions that have all helped. I wish I had more to tell you. I'm also looking for answers. Please keep us posted!

I have adrenal fatigue and POTS. I got a little finger HR/O2 monitor that I used to take with me when I started trying to walk again. At first I could only go 5 minutes but I just did that for 2 weeks until my HR wasn't hitting 160. Then, I went to 10 minutes. I tried to walk slowly enough so that my HR stayed below 150. I did that for 2 weeks. I kept adding 5 minutes about every two weeks and keeping my eye on my HR whenever I felt extra dizzy (I was always dizzy back then). After a while, I didn't need to take the HR monitor with me anymore because I felt stronger and was more confident that I could guestimate my HR based on my felt experience. Before I felt good enough to walk, all I could do was lie-down yoga/PT. As long as I didn't have to lift my head up, I could do some things. As soon as the head went up, forget about it! Just keep trying to do what you're able to do, even if its only lifting your legs up and down in bed throughout the day. Just do as much as you can each day and then add more when you're able. Don't be too greedy to run marathons again and don't let yourself do nothing...there is always something we can move, even if it's only our pinky Also, if you can, find an integrative MD to see. I think her crazy supplement routine is what allowed me to get out walking again. She found so many small deficiencies that the big hospital doctors completely missed and I am dramatically more capable after months of her care. Hope this helps.

I get major leg cramping but it is helped dramatically by both magnesium and baclofen (a muscle relaxant that doesn't cloud my thinking). I also get erythromelalgia and it feels like the pressure you describe. It's common in hands and feet and mine is probably caused by my small fiber neuropathy. Hope this helps.

I have small fiber neuropathy and POTS. the SFN was diagnosed by a skin biopsy. But, my first biopsy (left ankle) was negative. The second biopsy 6 months later was mildly positive in right ankle but pathetically positive in the right thigh...makes no sense but that's what I got. I am hoping to give subcutaneous IgG a try when I see the neuropathy group at Mass General in January. Other than that, my integrative MD has been a huge help. I started taking alpha lipoic acid and the tingling went away! I still have erythromelalgia though, but that is getting a bit better now that the weather is cooling off. I was taking pyridostigmine but I'm improved enough from all the integrative MD supplements that I've stopped that. It did help a lot. Baclofen (a muscle relaxant that doesn't cloud my thinking) is now super helpful. Good luck!

I've been on and off mestinon for over a year. The initial dose did nothing for me. I needed a pretty high dose before I had any benefit.

Specialist, specialist, specialist! And then add an integrative MD. Getting the diagnosis from the specialist was key but the prescriptions weren't really working for me (I have a genetic variation in my CYP450 hepatic system so I am a poor metabolizer of like 60% of pharmaceuticals). Anyway, I've been seeing the integrative MD since April and I take supplements/prescriptions 5 times/day but I am waaaay better. I can work at least a half day almost every day and I almost never need my wheelchair. The integrative MD discovered all kinds of things that contribute to SOB like low zinc, low protein, low T3 (TSH was fine), mild anemia, MCV too high (indicating a low B12 level even though direct B12 mesaurement was fine), anaplasmosis (a tick-borne infection), etc. All the amazing folks at Brigham & Women's missed all of this! So, don't overlook the power of getting your nutritional stuff sorted out...a lot of us have malabsorption issues and need way more vitamins than typical folks. Good luck and let us know how it goes!

I'm sorry your feeling so sick. That is so disconcerting. If your PE is not life threatening, then treating with anticoagulants and/or nattokynase is really all there is to do. The radiation from a CT scan is 100 times more than the recommended safe radiation exposure. Radiation does not dissipate with time. It stays with us forever so it is a big deal exposing yourself to more. When I had my first PE, they did the CT scan. The next week I either had a second PE or my dysautonomia began and I refused the CT scan because of the radiation risk...and it clearly wasn't a life threatening PE because I could walk and talk, albeit with difficulty. My heart rate went up to the 170s on standing and was 130 at rest. I was in the hospital for 3 days (the second time) and on IV heparin. I felt way better a few hours after starting the heparin which was, in hindsight, the big clue that it was dysautonomia...because it wasn't the heparin that made me feel better, it was the saline! 3 months later, I went to see my new cardiologist (Dr. Goldhaber at Brigham & Women's, the world's leading expert on clots) and he sent me to the ER because of the SOB was so bad (I told him that was normal for me...he said that's not normal!). I consented to do another CT scan and it was completely clear. They sent me home and referred me to a pulmonologist and that (4 months later) led to the dysautonomia/POTS/small fiber neuropathy diagnosis. So, I don't know if it's a PE or not. If you really want to get the CT scan to put your mind at ease, I agree with the other post; find a different hospital. Also, I am wondering if they can't do some kind of MRI for this? I don't know... Also, I'm sure they checked you for clotting factors? And if you're in bed a lot, get your legs moving as much as you can to prevent more clots from inactivity. My PT told me to draw the alphabet in the air with my feet! I could only do a couple letters at a time back then but I guess every little bit helps. Let us know how it goes!

This study speaks a little to that: https://www.ncbi.nlm.nih.gov/pubmed/9670404

Potato chips, olives, salt straight from the shaker...anything majorly salty

I'm very late to this topic but I just found it. I've been on mestinon for 2 months now. I didn't feel much benefit at the starting 30 mg dose but now that I'm titrated to 90 mg three times a day, I feel tremendous benefit and no side effects. When it wears off, I can tell without looking at the clock that its time for the next dose. Biggest issues for me are shortness of breath, dizziness, visual issues, and brain fog. The visual issues are still ongoing and the dizziness comes and goes but is definitely less than without mestinon. The shortness of breath and brain fog are really improved. With mestinon I can work for most of the day. Without it, I was lucky to get in 2 hours before I was overwhelmed by symptoms. I don't have POTS but am being tested for small fiber polyneuropathy (SFN)... SFN sounds pretty accurate but the skin biopsy won't be back for a couple more weeks. My dysautonomia was diagnosed with a level 3 stress test (including cardiac catheterization)...the volume of blood coming back to the heart was way too low so I'm having pooling.

Mine goes up when standing and is in all the ranges you mentioned. I found it helpful to monitor my BP at home really closely for a couple days and write down the readings. This started to show me some clear patterns. My symptoms don't always correlate with BP and HR....I thought they would!

I wish I could help. I just had my hip replaced in January after 4 years of constant pain...I don't know how you're managing it. My dysautonomia developed 3 weeks after the hip replacement when I had a pulmonary embolism...my breathing just never got better. But, I don't have any pain any more. I hope you can find a surgeon!

Here's a recent paper by Oaklander. It's high science but helpful. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4720682/ It looks like when we're talking about small fiber neuropathy with dysautonomia, we're actually talking about small fiber POLYneuropathy...this is when the nerves that innervate the organs (like heart, GI tract, urological system) get effected. I quote from the above paper: "The cardiovascular symptoms include not only orthostatic hypotension and tachycardia, but also impaired cognitive function, headache, and exercise intolerance due to circulatory insufficiency" The really good news is that there's a chance for the nerves to regenerate with treatment: "Among the 11 early-onset patients treated at least 3 times with IVIg, 2 g/kg/month, 38 % did not respond and discontinued treatment, and 62 % had significant improvement and continued treatment [74]. Adverse events were as expected and largely manageable. Repeat skin biopsies and AFT provided objective confirmation of axonal regeneration."