Psalm 23

As well as enough fluid to dilute it out.

I am only able to tolerate the CMC sodium chloride tablets if taken with lots of fluid and with food. Without the fluid and food I'm sure they would cause a major GI upset. Instead of the sodium chloride tablets which I do still take if I am out of the house I usually dissolve a measured amount of sea salt into a small amount of water and just down it and as with the sodium chloride tablets I consume a large amt of fluid and make sure I have food with it. I think the key with any of the consumed salt forms is to make sure you have food in your stomach with it. Janet

Hi lynnie 22, I typically experience very cold legs, feet, hands and whole body much of the time except it's improved at present because of warmer summer temperatures. It is not limited primarily to night time but throughout the day. As we move into cooler months the problem intensifies to the point of feeling freezing much of the time which I attribute to a thermoregulation impairment. I also experience numbness, pain and discoloration in my extremities. I have a few microwaveable warming pads ( transportable ) and a heating pad that helps. Compression hose and insulated socks also help. Do you notice a discoloration to your skin as well as the coldness ? I wondered about PAD for myself at one time but I was diagnosed with Raynauds instead and that seemed to make more sense anyway especially as many others with POTS seem to have a Raynauds diagnosis. Check out some of the old threads about Raynauds and POTS. Peripheral neuropathy could be a possibility as well. Of course let your doctor know about your problem and see what he/she thinks is the reason for it. I hope it improves. Janet

Hi Joann , I'm so sorry you are dealing with something that is causing you such problems and has yet to be diagnosed. How frustrating for you.The "it' must be one of those elusive things that doesn't show up on standard diagnostic tests. Not being able to bend and lift without serious consequences is pretty frightening and limiting. I can certainly understand your concern over starting a new medication and dealing with potential side effects. The unknown is always scary especially with regard to medication. And yes, Clonidine has been immensely helpful for me. I hope you get some answers soon. Keep us posted. Janet

That's wonderful that Tyler is finally able to sleep. Good thing the Neurologist thought to prescribe the extended release clonidine. Thanks for updating us.

Hi Melanie, Welcome to this forum. I hope it becomes as much of a source of encouragement and support for you as it has for me. Thank you so much for sharing your story. I am so sorry for all you have had to endure. I can not even begin to imagine your struggle. I have significant limitations but not anywhere near what you experience. In spite of all of your limitations though you have such an amazing attitude. What an inspiration you are to those whose lives you touch. I will remember you and your family in my prayers. Keep us updated on how you are doing. Janet

Hi Joann, I am taking Clonidine and Propranalol at present with significant symptom improvement and minimal side effects. I was prescribed Labetalol a few years back but experienced severe chest pain while on it and discontinued it quickly. I have never been on Bystolic. I have a very labile b/p. Janet

Most of the time I take 1/2 tsp. ( 3 grams ) sea salt dissolved in water three times a day. It's a Trader Joes brand. If I am out somewhere I find it easier to take sodium chloride tablets instead. I order them online from Sears. The brand is CMC and they are 1 gram sodium chloride per tablet. The sea salt is a way less costly then the tablets and seem a healthier choice to me. I take the salt at mealtime and I don't have any negative GI response from it. Your doctor of course would have to be the one to actually make his recommendation on how many grams of salt he wants you to consume per day. Janet

Thanks Alex. Very interesting article. MCAS is something I intend to be evaluated for as I have an awful lot of the symptoms.

Rachel, That's great news that Tyler slept better last night. I should think he would feel somewhat better as a result. Hopefully the improvement will continue. I'm glad to hear the tremors have minimized a bit. Maybe Tyler will be better able to tolerate his exercises after the next Strattera dose increase. Best of wishes for a successful online school year. Janet

Thanks for the response pm72fl. I thought it might be something along those lines. It wasn't such a noticeable problem for me when I was at Mayo last so I didn't mention it but had planned on asking about it the next time. I get the muscle twitches and other odd sensations as well. Crazy stuff that's for sure. Janet

My Mayo Neurologist recommended 6 grams of salt daily as a starting point. At present I consume 9 grams daily. I divide it up into three doses. I used to take salt tablets but now measure out sea salt instead. I dissolve it in water and just drink it down. I also salt my food. I drink about 2.5 liters of fluid per day which was also recommended. I have no ankle or foot edema which I am thankful for as it allows me to wear compression leggings as opposed to hose. In spite of all of this I am constantly having to void. My Neurologists recommendations were based on all of his findings and my diagnostic work up. My volume status will be reevaluated on my next visit. Janet

Hi Rachel, I hope this type of Clonidine is more helpful for your son. I wish I could provide some feedback but I I haven't tried the timed release version. Please let us know how it works out. I'm thankful to hear that you are finally starting to get some answers and hopefully some beneficial treatment options. I so hope Tyler is able to produce those needed antibodies. Continuing with home schooling and keeping Tyler away from crowds is excellent advice from the Neurologist. Please keep us updated. You're such a wonderful mother ! Janet

I can tolerate one cup of coffee first thing in the morning after salt/water and medications. It helps get me going so I can walk. I don't tolerate regular tea as it causes nausea. Must be the acid.

My Rhematologist prescribed Cymbalta for me several years ago for fibromyalgia. I had too many problems with being nauseated and jittery and so I discontinued it. I realized later that for me an SNRI was probably not a good drug choice as I already had high NE levels and I should think that particular type of medication would raise the level even higher. I hope this medication or another fibromyalgia medication is helpful for you. It really is trial and error in finding the right one. I went through quite a few before finding one that helped me. Janet

Hello and welcome pm72fl, I guess this vibration sensation isn't too uncommon from what I have gathered. Mine started in my legs but is now throughout the entire body. I'm just growing accustomed to it. Did Mayo give you any explanation for it at all ? We seem to have many of the same diagnoses you and I. Thanks for your input. Janet

I am a huge Mayo fan. I went to Mayo, AZ. It took 4 months to get in. I was there for 10 days. While I am not cured I was correctly diagnosed and received effective treatment recommendations. They are very thorough at Mayo and do provide phone support for out of state patients. I am planning a return visit. I hope you get some answers and help soon. Janet

Hi Sarah, Thanks so much for the Clonidine patch suggestion. I will have to bring that up at my next appointment. I have extremely sensitive skin so I wonder if that would be an issue. I have to use cortisone cream quite often. I'm so glad you had a great doctors appointment today and have some new things to try. In regards to the compression hose ( I actually wear compression leggings ), there was a slight adjustment period but not too much. I really loved them from the time that I got them. They help tremendously but unfortunately lately I have developed such an intense problem with intermittent burning skin on my legs that the hose seem to irritate I end up with them on and off throughout the day. I'm not sure what to do. I can't bear the thought of giving them up. I keep hoping this burning problem will disappear soon because I find it so much harder to function without the compression. I hope you find them as helpful as I have. I take in about 9 gram sodium per day. I don't base the amount on blood pressure readings either as mine is very labile and can fluctuate rather a lot throughout the day as well. 80s/40s to 200/110. You take care too Sarah. I appreciate your help as well. Janet

Hi Spinner, I'm sorry but I realized I did not express myself very clearly. What I actually meant to say was that 2005 did mark the end of life as I knew it but many years of illnesses and accumulating symptoms preceded that final life changing crash. Janet

Hi Alex, I'm so sorry you experienced such a frightening occurrence. I'm glad it resolved and you are okay. That must have been a long hour and a half I'm sure. Good thing you didn't have the added trauma of ending up in the ER though. I have been on Mestinon 60mg tid for about 22 months now but have never experienced any adverse reactions from it. Being cautious with your dosage is a good idea. Take care. Janet

Hi Sarah, Feeling overheated is the worst. How horrible to pass out in a Kmart. I hope you didn't hurt yourself. I haven't passed out in a long time. I'm wondering if because I have been developing POTS symptoms over the course of so many years that I have developed a stronger compensatory mechanism. I have enough of a fair warning system as symptoms build to sit before I pass out. Actually when I listed improved thermoregulation as a Mestinon benefit for me it was in regards to cold tolerance. That's one of the most ridiculous things about this condition is the narrow range of comfortable temperatures. It doesn't sound as if my morning routine would be a very good fit for you especially factoring in preparing for work and what sounds like almost unbearable migraines.Yikes. I'm so sorry. That's awful there isn't something to alleviate your pain. I guess we all find a different exercise schedule that works for us though. Another trial and error thing. Thanks for sharing the rest of your medication info with me. I wondered if you were on Clonidine and Propranalol as well. I cannot imagine life with out Clonidine. To not feel like I wanted to jump out of my skin all the time has been sooo nice. I was on 0.15mg bid but had side effect problems so I ended up back down to 0.1mg bid so the small propranalol dose was added. I'm going to write down your meds,dosages and schedule you follow. Tomorrow I have an apt. with my Cardiologist who I'm sure will not even consider Florinef but will push for a clonidine or propranalol increase. I will most likely end up in a holding pattern for a while because of a Mayo visit delay that is the result of my not changing insurance when I should have. I appreciate all your florinef info though as it will be helpful in future. How many grams of salt do you take a day ? Like you I am really thankful to have medications that help but sad at the same time to realize that this is probably here to stay. I wear an abdominal binder most all of the time. It helps immensely with general abdominal pooling and postprandial pooling which has been a huge issue for me for years. I really hate to take it off. Trying to eat even a small meal without my binder is horrible. I also wear compression leggings though not on a daily basis as I do the binder only because it has been made too difficult on the warmer days. I notice a huge difference in how much longer I can stand before I am overrun with POTS symptoms when I am wearing the leggings. I have no problems with foot or ankle edema so I can wear leggings instead of actual hose. I have developed such a severe problem with SFN symptoms in my feet I couldn't stand to have pressure on them anyway. Always having to think about how slowly you have to move does get annoying. Thanks for all the exercise info. The last instructions I received were very basic. Nothing was even said about a target heart rate just length of exercise time. I'm not sure swimming would work for me. I have a pool but even in the heat of summer I can't tolerate the temperature differential. I chill really easily then pain sets in. It's better then it was but I still haven't even been able to step foot into my own pool in several years. I have problems as well with difficulty in maintaining arms being in an upright position for very long. Must be a common POTS problem. Oh dear, this has gotten too long. Sorry. Janet

Hi Sarah, You're welcome. I prepared for the worst in terms of side effects from the Mestinon but amazingly there were none. The benefits for me have been restrained tachycardia, somewhat improved fatigue, improved thermoregulation and improved gastric motility. I think I am probably forgetting one. It was started at 30mg tid then increased to 60mg tid a week or two later. I just hope it continues to be effective for me as I have read other people post complaints about Mestinons loss of effectiveness over time for them. Thanks so much for sharing your Florinef and Midodrine information and experiences. I have been very curious about those two medications. I will be discussing them at my next apt. It's nice to know that your florinef acne side effect was temporary. I'm a bit old to develop acne. Lol. I guess with the Midodrine you get used to goosebumps and numb hands. It's all about weighing out the pros and cons. I'm glad it didn't worsen your migraines. I cant imagine how dreadfully painful and debilitating those must be. Chronic headaches are one of the few problems I do not have. This whole medication thing is still so weird to me in that for most of my life I have been so anti medication unless absolutely necessary. Now here I am embracing any medication out there that will improve my level of function. Lol. I guess I did go through some medication trial and error with my Rhematologist in trying to address pain issues. Like many here I have had some negative experiences now in the distant past. I am all about moving beyond that though and am truly so thankful for the care I am presently receiving. You sound like a very positive and grateful person yourself Sarah. Oh, just one question I wanted to ask. Do you use an abdominal binder or compression hose ? Whenever you feel up to posting the exercise info is great. I will really appreciate it but no rush. Thanks so much.

Hi Shona, Wow. I'm sorry you had such a terrible reaction to acupuncture. I had been wondering how you were managing with your shingles. I hope you have recovered by now from whatever strange thing occurred earlier. I have never had acupuncture before but have considered it a number of times for pain reduction. Now I'm not so sure. I hope someone can shed some light on this reaction. Keep us posted on your condition. Janet

Hi Sarah, There was one other thing I wanted to make mention of in regards to my present exercise plan. The only way it works for me at all is to maintain the same morning routine of taking salt/fluids and medications and waiting for a while then doing my walk around the neighborhood. I do it early enough to avoid any heat because I am completely intolerant of heat and if I feel overheated at all that will cause extreme dizziness, nausea etc. I guess when I said I didn't have dizziness problems that is only in a very controlled setting. That would be one of the advantages of using a recumbent bike instead of walking out side since it would be indoors with temperature control available and also if you had a problem you would be in a safer environment. Janet

Hi all. I think the bottom line here is stressing the importance that each person follow what ever is recommended by his/her own doctor. The above referenced article though is from 2008 which seems not very current to me. Does Dr. Grubb still not recommend salt loading for hyperpots patients or has that changed ? From what I have read a more current line of thinking is that most hyperpots patients are hypovolemic and in need of salt/fluid loading. As Kayjay has pointed out testing can be done to determine volume status. I have very high NE and dopamine levels and a very labile blood pressure with highs of up to 200/110. Salt/fluid loading was recommended for me as well as other therapies by Mayo Neurologist. I have only one kidney and was diagnosed with CKD stage 3 two years ago but thankfully whatever was going on reversed itself. In any event I expressed concerns about salt/fluid loading with my Nephrologist and he did not have a problem with it. I really need my salt/ fluid and other therapies to function. Janet