I was Goole-ing something about EM and one of the hits was a post by Libby called Good Hydration - bad Vibrations.
I was immediately GRABBED by this title.
She said that her EM got worse when she was better hydrated.
My ED doc told me the other week that she has seen EM in ED patients who "waterload" and she thinks in my case that my chronic LOW SODIUM has damaged my sodium voltage channels. I am supposed to limit my fluids and up my sodium to try to get some improvement to the EM.
SO YES YES YES- if you over hydrate it will lower your sodium in your blood and that can interfere with the sodium voltage channels and create more of a nerve disturbance.
Very interesting. I know from reading some of your past posts you weren't so sure if your doctors were on the right track regarding the cause of your EM but after reading libbyk's post It sounds as if they may be on the right track! I hope this is encouraging for you and I do hope with continued nutrition and enough sodium you can beat this thing!
Jordy516 and Libby K, that makes a lot of sense to me! I've seen the same thing in myself... if I try harder to drink water like my various doctors want me to, my EM flares up. Thanks! This explains a lot!
This is interesting, since I am a “salt waster” and cannot retain sodium, which also depletes my body of water. Additionally, I had a phone consult with Dr Jay Cohen, and he said increasing his sodium helped his EM. Can you tell me if you are on a medication that helps with sodium channels? I recently saw a neurologist at Yale, and he wants me to try an anti-convulsant which is a sodium blocker. (I have not tried it yet, as it sounds counter-intuitive). Thanks!
My doctor wanted me to try to limit my fluid intake- there is a formula which I think you can find on the web - you enter your weight and then there is a calculation to figure out how much fluid you should drink during the day- but i would err on the side of having less. I know that I was told to have only 64 fluid ounces tops at 83 pounds. That sound like a lot but I was having about 160 fluid ounces- I wasn't consciously over drinking but I think I was substituting tea for food. Anyway, you may have to cut back fluid- it might be better than adding salt if you have other problems which having a high sodium diet could hurt- like hypertension/
But if the sodium doesn't work then a sodium channel blocker could be worth a try. I listened to a clip from the Mayo Clinic which Dkel sent me. They are working more with TOPICAL treatments rather than internal pills.
I know that Lidacaine is a sodium channel blocker- I was also prescribed the Lidoderm patches. That might be a place to start too. Please talk these ideas- fluid restriction and patches with your doc if she/he is open and supportive.
Rachel, do you know what causes your salt wasting? I have a mild form of a rare adrenal disorder, and, when a doctor actually knows what it is, she/he always asks about salt wasting, which I’ve not experienced. Just curious …
Yes- I have adrenal insufficiency. I have low Cortisol and low Aldosterone. Low Aldosterone causes salt wasting. Typically you crave salty foods, have increased urination, and low blood pressure, since your body doesn’t retain salt. I have increased my salt intake (sea salt), and it has helped. Let me know if you have any other questions! What type of Adrenal issue do you have?
OMG. I thought I was the only one who felt this way. My hubby & everyone is always saying I need to drink more water, but Ive told my husband numerous times that I feel worse when I increase my water intake. He thinks I'm nuts!!
Hi Jordy, thank you for posting about this! I usually have some salty foods every day - maybe I crave them for this reason. I tend to have dry skin and (sorry, tmi) constipation, so I can't really drink less water than I do. Trying to keep a good balance. Next time I am at the doc's I will definitely be asking about this! Thanks again.
Rachel, I have a very mild partial 3-beta hydroxy dehydrogenase deficiency. The only symptoms I’ve ever had of it are being tall as a child and acne that started at a very young age, but with a little prednisone and a contraception pill, it is under control. From what I understand,salt wasting is a symptom of the stronger form (the parade of med students that are inevitably brought in to check me out always ask about it). This is apparently quite rare - like EM - which makes me wonder if there could be any relation between the two…
The salt theory is interesting to me, too, because around the time I developed EM symptoms, I had lost a lot of weight through diet and exercise.
Also, I know family and friends are just trying to help, but if one more person tells me all I need to do to feel better is drink more water (or think happy thoughts), someone might get hurt…
