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About jvherenow

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  1. 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 :*(
  2. @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.
  3. 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).
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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 yo
  9. 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 m
  10. 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 M
  11. 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 suppl
  12. 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).
  13. 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 poste
  14. 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
  15. 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.
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