kayjay

I had one more thought to piggy back on what Alex said, can you do an Epsom salt soak. It feels good and magnesium can be absorbed through the skin. It's generally considered pretty safe. Have you had your vitamin D checked? I had pain when mine was low.

loot- the issue really is that other problems can cause the same exact symptoms. Most of us have also had lots of other testing to rule out cause of postural tach. Thegron- have you had a plasma potassium check? I had my worst migraine and pots flare after a Bp pill that raises potassium. I would have definitely used the term "thunderclap".

Actually the v8 is helpful. If I thought about it,I wouldn't like it much. I just drink it very quickly.

I have children that I have to drive to school so I'm up between 5 and 6. It's easier for me because I have other people depending on me but I've developed a routine and some habits that have helped me. Mayo clinic suggested a v8 when I wake up but before I stand. I put a can on my nightstand before bed. I also keep an glass of water handy. If I wake up in the middle of the night, I drink. I don't shower in the morning and I have clothing ready the night before. When I get out of the bed- I sit on the sofa with my feel up for about 20-30 min. I drink a cup of coffee. If I didn't like coffee I would take a caffeine pill. It's also is a bit obvious, but I also don't stay up late. Even if I can't actually fall asleep, I'm usually in bed between 8:30 and 9:30. I sleep with a sound machine in a cool,dark room. I am considering replacing my blinds with blackout shades. I struggle to get good sleep so I am big in my pjs being comfortable, great pillows, and I don't let the dogs sleep in my room. We also don't have a tv or other electronics in our bedroom.

Tinks- my short answer is that yes my heart rate increased over time. Now it is usually low. I'm going second looneymom's advice to get it checked. My heart has been very healthy in the past but if something feels "different" my cardiologist wants to hear from me. The idea of a heart monitor sound like a good one if you are noticing changes. My general internist has also reminded me not to assume everything is dysautonomia-related. Good luck.

I just had a conversation about this last night with the hubs. Since I've been paying attention to D and intentionally getting sun my pain has greatly reduced. I was on lyica than cymbalta for pain. Alex mentioned somewhere (not sure it if was this thread because I didn't re-read) that it takes a few months. I realized my pain was lessened after 3-4 months. Hopefully it will happen more quickly for you.

It makes sense to me. I've had the same experience with Epsom salts. I wonder how many of us are effected by melatonin? It also makes me wonder if having Hyper makes a difference. Hmm- a little lab rat named Kayjay may conduct a one subject experiment. It's the weekend so I'll stop taking it and report back to you on any morning Bp changes. I was thinking of stopping anyway because I hate taking "stuff".

I find it helpful but I don't walk around after taking it. I take melatonin just before bed. I have noticed an improvement in my sleep, but I don't notice a blood pressure effect in the morning. Presumably the effects are short-lived? Thanks for sharing this information.

I just tucked my kids in bed and was thinking about you again. I didn't mean to imply that the way you were treated was ok. It's hurtful, insensitive, and disrespectful. How she is treating you is really about her shortcomings not about your illness and "not pushing though". Because "I don't look sick" sometimes even my husband forgets how I feel. He doesn't understand, although he has become compassionate over time. He knew me in highschool though so my illness took him by surprise. I have a sister in law who really is a sweet heart -but she really doesn't "get it". Most people won't. It doesn't mean that it's ok for you to be mistreated, I just mean that sometimes even good people are cr@ppo about invisible illnesses. I try to be extra patient with them as though they have a learning barrier. It's almost like having a student in your classroom who isn't a native speaker. Best wishes for you- relationships are hard enough with perfect health.

I have some very unpleasant inlaws. I'm respectful and polite, but I will not go to their house. I support my husband's relationship with his family- from a distance. The final straw for me was when my father in-law bullied me in front of my 3 year old daughter. His family is dysfunctional but that's not his fault. I know I'm the most important person in his life and but he cares about his birth family. We've certainly had some fights about it. My husband is in a very sad position and I try to be compassionate towards him. He travels about 25 mins. each way on Christmas Day to spend maybe an hour with them. I stay home with my children and put together Legos . It's our down time between celebrations with my family. I'm sorry to not be with him for those two hours but I don't pressure him. I know how important I am to him. I'm not really disagreeing with previous posters but for me a cr@ppo family wasn't a deal breaker. They were horrible before we got married and they still are. My only mistake was hoping they would change. My husband is NOT like his family.

Yes. My doctors have assured me many times that it's ok as long as it doesn't stay high for hours.

I'm sorry that you are feeling discouraged. Many of us sadly understand. I absolutely would follow-up. Perhaps you could see a different doctor? My current Cardiologist and General Internist are accessible to me, and willing to treat my symptoms. They sent me to Mayo Rochester to confirm the diagnosis and to ensure that nothing was being missed. I left with a comprehensive treatment plan. Treatment HAS helped me. I am my general doctor's only POTS patient but he has been amazing! He cares about the Quality of my life. I hope you persue good medical care. It's very hard to advocate for yourself when you don't feel good.

I have both but absolutly had POTS first. I'm curious if other have a similar experience? I believe that my CFS is a result of "pushing through" and not having a diagnosis. Perhaps those who are diagnosed with and treating their pots can avoid the CFS. +1 on the exercise component. I do well with exercise if I keep it in check. Exercise is one area that I've learned "less" is more. I highly recommend swimming for those who can. Initially I gave away my rollerblades, tennis gear and started restorative yoga. Consistent exercise helps a bit with fatigue. Intense exercise is a no-no for me.

I'm sorry that you are having tooth issues. I have read that problems with gluten can effect teeth. I was told that I had "IBS". I believe that I was having problems with gluten and fructose. If you're not absorbing all of your nutrients you can have tooth problems. I just was at the dentist and she recommended the lysterine with floride. I know it's gross tmi, but if I'm really sick I don't want to brush. You can also get it without the alcohol it the stinging bothers you. There is also a gum called "SPRY" which is good for your teeth. I forget the details but it was explained to me because I tend to have dry mouth. It prevents decay. I eat a lot of hard cheese and have read that that is healthy. Also if I'm "sick" I rinse my mouth out as soon as possible. This probably sounds simplistic but anything acidic can be bad for your teeth. All sodas, tomatoes, citrus, etc are acidic. The dentist told me that some people damage their teeth by sucking on lemons. I cannot offer any information about the florinef. Hopefully you can figure this out. I haven't had a ever cavity or problems but I think that it's sometimes genetic. My husband has had cavities and a chipped tooth. It's unpleasant to say the least.

He's a keeper! My gp was angry on my behalf that it took so long for me to get diagnosed. He thinks that me being a young female was an issue for some doctors. He that if I was male I would have been taken seriously sooner.

I take a liquid iron supplement mixed in water. Actually I don't take it currently as I am no longer anemic. I'm not sure why, but perviously my ferritin levels were low even with supplements. There is definitely an overlap of symptoms.

Hello fainting goat. Cute name. My sil has pet goats. They are quite funny little guys. I also was told to stay "hyper hydrated" and increase my salt. I realy struggled with it and finally asked for more specific guideline. I'm usually thirsty and can easily drink too much plain water. I don't know if you are the same, but I finally realized that several days in a row of unchecked water drinking will send me to the hospital. Now I keep track of my fluids and and feel better. It's nice to have new members and I hope you improve soon.

As for "salt loading" I loved how Hanice did it with Cheetos. I don't eat them because they make me feel sick- but yummy orange non- nutritive "cheese" can be very tasty. I personally have a secret love for "easy cheese" spray can "cheese"... I wish it was healthy Lol But Alex- you are absolutely correct "salt loading" means different things to different people. I had to ask how much water was ok to drink for me and got some guidelines for how add more salt to my diet.

I agree Alex. I survived low sodium/high potassium. It felt pretty horrible though

I have a friend with ms- and most ms patients get prescription D. I'm not sure why. I don't want you to loose hope that you will feel better with the D. I am really careful about what I eat and the nutrients I get. Please be encouraged. I think a side effect of low D is a depressed mood. I'm a happy contented person by nature but I think I was more easily irritated when my D was low. I think you are going to physically fell better and notice an improvement in mood also. It's hard to be optimistic when you are exhausted. Please just give yourself time to get your levels up. I think I was having some issues with fat soluble nutrients in general. I didn't notice that my skin was bad when my d was low, but I notice now my color is good and my skin feels really healthy.

I'm glad that you figured it out! Low sodium seems to give me bradycardia. I never took my heart rated after Epson salt soaks but I had "almost pass out" low blood pressure. I have a cast iron claw foot tub that I love to bathe in. I have been soaking in sea salt instead. I just buy inexpensive food grade sea salt and It feels just as good to me. It took me quite a while before I put 2 and 2 together. I take a multi with magnesium and I also eat foods high in minerals. Lately I'm into clams, oysters and walnuts. I don't eat them together

Yes yes yes (vitamin D, CFS and Fibro). I was surprised when I had low d this past spring. I've never been one to avoid sunshine but I'm indoors almost all winter and I was using a lotion with sunscreen. I am trying to get D as much as I can from the sun. Did he recommend a type of D supplement? They aren't all the same and I'm using a D3 gelcap. It may take a few months but the D should make a big difference. My d levels were normal last time I had them checked and my pain is greatly reduced. I take also take provigil with some success. Hopefully d is the primary issue and you will notice a difference in a month or so. CFS has been a ongoing issue for me for the last several years.

Hanice, I hope that you are able to find a "non- Neanderthal" doctor soon. I assure you that the recommendation to increase salt by my doctor was not "willy nilly". As I posted in another thread it is essentially a prescription. Salt is in effect a medication to treat my pots. I remember you mentioned that an er doctor suggested that you had pots. Please understand that many of us have been diagnosed though a battery of tests. After my tilt table test, I spent a week at the Mayo Clinic in Rochester Minnesota. Doctors there were among the first to recognize POTS. Like Alex, my urine sodium was low. My potassium has never been low. I certainly would not take potassium suppliments without the supervision of my doctors. It will lower my sodium and make my syptoms much worse. Thankfully I have doctors who know what they are talking about. Their recommendation to increase my sodium was spot on. I'm doing so much better and hope the same for you! P.S. low blood sodium can be deadly. It's called Hyponatremia. Additionally too much potassium can be deadly. It's not a good idea to take potassium supplements without checking with a doctor. Too much potassium may cause Hyperkalemia. Potassium supplements are not recommended by Mayo (in general) but especially for anyone with heart or kidney problems in particular. http://www.mayoclini...kalemia/MY00940

I had headaches everyday for years- sometimes migraines with aura or vision loss. I remember where I was when I realized my headache was gone. I hope that happens for you!!! I don't know what made them go away but I will share with you a few things that I believe helped. 1) a better handle on my pots ( low dose beta blocker, compression, salt and fluids) 2) I also get sinus headaches spring and fall. I'm quick to treat them and also try to prevent them by using a nasal rinse. If you have allergies I cannot say enough good things about neilmed sinus rinse. My children play sports and they also have seen a benefit. 3)for me getting sleep means medications. I'm not happy about more medications but sleep is so important. Especially with headaches 4) I am 100% gluten free. It's not for everyone but it has helped me in many ways. I also have to stay on top of my vitamin d and nutrition in general. I choose my food baised on nutrition. I eat oysters, kale, beets, eggs, etc- foods I actually don't like but I know they are good for me.. I'm sorry that you are dealing with headache pain. It's rare for me now, but I haven't forgotten how hard it can be,

My mom has a pacemaker so I know a little about them. She does not have pots but her heart was stopping for 7 seconds or so at a time. She is doing great and back to running circles around me. It is not recommended for POTS (but sometimes coexisting conditions). Essentially pots (for me anyway) is a neurological problem- not a heart problem. My understanding is that pots people with pacemakers may feel better for a year or so- but end up back where they started and pacemaker dependent. I see a really good EP and have my appointment with her next week. I'm going to ask about my bradycardia- she hasn't worried about it in the past. If I learn anything new that might be relevant I will absolutely post the information.