Miriam Poorman-Knox

Are you taking sodium tablets? I found that doing that along with using sea salt helped alot. I still ended up in the hospital alot until they put me on florinef. (Now I tend to run high BP) Since you have a port I assume you get hydration at home. Perhaps that needs to be adjusted preemptively???? Miriam P.S> Got any kids to _iss you off?

Sugar isn't in EVERYTHING!!!!! Our diet usually consists of protein, complex carbs (fruit) vegetables some can eat dairy, and SALT and WATER. It could be that you dont have the right volume of blood and thats why you are losing fluids. If chocolate you must eat and don't we all. Dark very good choc is best, its strong and fulfilling so you waon't want much. AS FOR YOUR DR> how does he know this if you don't go and keep telling him about it. I truly believe that for some going to the doc is an outing. It is for us, a very tiring outing needed to stay functional. Go back until someone takes you seriously........Remember you are your own advocate right now. If you MD doesn't know much guide him to the NDRF website, while you are there aor copy info, so you don't have to wait. I wish you strength. Miriam

I too have severe pots and must have sodiun and h2o. Ialso get IV's reguarly. Additionally I am on m,any drugs , they do help. The greatest frustration is that this is a process, and things change. P.S> No one ever told me that I could ask for my resuls when I left. Bummer Miriam

Dig it!!!!!! YES I'll fetch my list and post them. Some are general for all of us, some my husband who understands dysautonomias wants to know, and I didn't think of. Be prepared to see other Specialists. They really were all great, no one even volunteers were ever rude or short. Let me know how you like the NEURO tilt a whirl(Imean table). Back soon with my list. P.S. I also ssaw that doc first, very nice. Miriam

YES I'll fetch my list and post them. Some are general for all of us, some my husband who understands dysautonomias wants to know, and I didn't think of. Be prepared to see other Specialists. They really were all great, no one even volunteers were ever rude or short. Let me know how you like the NEURO tilt a whirl(Imean table). Back soon with my list. P.S. I also ssaw that doc first, very nice. Miriam

Welcome, I am so sorry to say, since the beach is just a large piece of heaven to me, that the heat may be causing your problems. Since we aaren't able to take hot shoers, saunas, whirlpool, etc. Our body can't cool itself. Beaches with breezes are ok and I have found a few. Otherwise there are articles of clothing that are cooling agents. Vests like police, fire wear. Hats, love mine, mayo has some in their store website. Always keep water. When I lived in New Mexico and taught PE mmostly outside I froze bottles of water to take with me so I would always have water. You now know I assume that singing is not good for us. Makes many pass out because of the exertion. Welcome and I hope that things can be adapted for you to feel better. And tell your husband to goo. If ir werent for mine, I would still be passing out in parking lots in tons where no one knew me!!! He believed Miriam

YOU RULE this is why soooo many of us get denied. Especially when these "NICE" ssi workers call on the phone and ask questions. Messing with whats left of our wits!!!! Miriam

I get tird just seeing all you do. To answer your question YES make an appointment with the dioc at Clevland Clinic. She is good, and my back up. You always need someone who knows you. Sounds like its been some time since you have been seen by a specialist. You owe this to yourself. We moved here almost 4 years ago and I still havn't finished unpacking!!!!!!!!!!!!!!! Also it took me 20 years to get my bachelors had kids, etc. But only 4 for my mDivinity. Still am at home. Blessings. Miriam

Hi, This sounds like a real problem. My doc said that I should expect to see a 5-10 lb. veight gain. To eat 6x day. I really think you should call your doc and ask if you can get the things needed for a 24 hr. urine now so next week they will have the results.!!!!!!! You can pick the stuff up at the lab. That will also tell if your electrolytes ar imbalance. I also would try sugar free gatorade. After 24 hr test. Always eat ehen hungry andkeep the fluids up up up. I'm worried. Please let me know how you are. Everyones insights are expert and we need to remember the one thing that is true for all is the 24 hr. urine. I for one would like to lose weight, but when I do its something bad, so I am happy to be me. And since losing weight is probably not wise at this point eat,(no carbs just complex) and drink. Miriam

FINd out who is covering for your FP, they have to have someone cover, and see that person. Having this while the injections work on your back seem counterintuitive. Harder for you to heal. Maybe calling the covering doc will give antibiotics. Miriam queen of sinus infections

Sweat test, holter, cardio, 2different tilt table teats. Many labs. Fat analysis from my abdomen. ECG, thryoid ultrasound, arrrythmia check, electrical test of my heart. They we thorough. Miriam

You are right, he really doesn't make you feel rushed, just heres this and this. Also I went alone, I don't recommend that . I am hoping the report comes soon. Miriam

I spent 2 weeks at Mayo, saw Dr. Low and many others. Had a good exam, and follow ups. I'm still not sure where I stand. I know through the cardiologist that I have mod-severe pots. My hashimotos that I goe when my son was born 23 years ago is still active and I have a thyroiditis. My heart other than CHF is ok. I was barney for a couple days and that was OK. He changed a couple of my meds, and I do feel a little better. I feel that I wasn't my own advocate because I had a list of questions and didn't pull them out to ask. He didn't rush me. I had another place to be and I had a brain fart. Now I'll have to wait till I get his plan. Sadly I don't know what moderate to severe potts means. I just know that I cannot deal with heat. I thought I would be gleeful after my visit. But still unsure. Oh well enough rambling......Miriam

Hi, This I know because of my past life. Never do any exercise over your head unless you are lying down. You can use weights on the floor mat etc. Raising your arms makes your BP rise/fall. The best exercise for us is circuit training, ending up on the floor to stretch for 10 min. on purpose!!! That way the blood floew is able to get back to its "home" Mieiam

Hey, If your pcp isn't back go to the ER. If you are showing christmas colors this is not good!!! As tires as you are this could turn into something more serious. I am glad that you were able to get the injections. The one thing my diagnosing dr. told me was that we needed to keep flexible even if in bed(sound wierd,but if it works). I also found thera heat works on my spine back ets, and they last 8 hrs so i can move them. Just remember we are all special and are blessed to have this forum to socialize. Miriam

Make sure that EVERY TIME you go to the doc he documents your symptoms and problems. And if he will put his opinion on your working. I do have a video that is meant for docs on ssdi on how to get the paperwork dome and I hope approved. Will watch and report. I too have been denied. Have a lawyer and because of the backup they sent me papers to have filled out by my docs to give to the judge and let the judge decide. Just got back from Mayo will wait and attach that also. Miriam

I have had this for many mooons, and my doc told me that this was when I needed to take the extra salt and beta blockers. It certainly does help me. It really is an overload, and think how we deal with them. As for the diah. irritable bowel is part of the syndrome, see if you can get something to calm that down for a while. Perehaps you can gain a minutium of power back. Miriam

Mt petikiah rash was from rpressure to my arms. They explained that it is part of the connective tissue and that is why the pet.... pop when pressure like BP is added. The rheumatologist is good, my cardioogist at mayo knew alot more about it. Apparently it does have something also to do with your heart, the pressure. Anyhow you are doing all the right things,, just having someone check you and they can refer you is the way to go. Miriam

AMEN It has always been my hope that a sense of humor is one of the commandments. For us to survive we and our loved ones must be able to just let the laughs go....... The good thing about responding here is that it has already been written so a memory can always be jogged!!!!!!! Miriam

Let the doctor know that without her help this WON'T happen and that she should then prescribe another mediciane that will be appropriate. The doctoe might not LIKE to argue with the insurance co. over their formulary, but that is her job. Without someone on your side you will always lose. So the person who prescribed the med should fight for it. I do know how hard it is. My husband spends many nights fighting and calling ins. co. to get his patients what they NEED. That is part of the relationship. Remember WE PAY these professionals to care for us--often we have to educate them. My husband and I have been giving rounds to the residency programs inPittsburgh to educate them about POTS from both the patient and then professionally. This helps. Don't let the doc slide without an alternative. Miriam

According to Vanderbuilt, and others most women begin having symptoms during or after their pregnancy. There are significant numbers showing that women who ultimately end up with the diagnosis have had these symptoms and were treated for the symptoms. When I statred lactating, I had also has hashimotos and sub acute thyroiditis-- and the combination of these effects even though one is autoimmune is that the body is struggling especially autonomically. Not everyone lactates. That is why it is important to have these checked out. I dealt with all insividually for 23 years until I was diagnosed last year. I do have all medical records for all those years and have been able to present them to Dr. Low and other specialists who agree that the ;lactation/pituitary is impotant NOT to dismiss. Just my opinion. However on Vanderbuilt as well as the NIH web sites Miriam P.S. I had early menopause at 34 years of age. <{POST_SNAPBACK}>

According to Vanderbuilt, and others most women begin having symptoms during or after their pregnancy. There are significant numbers showing that women who ultimately end up with the diagnosis have had these symptoms and were treated for the symptoms. When I statred lactating, I had also has hashimotos and sub acute thyroiditis-- and the combination of these effects even though one is autoimmune is that the body is struggling especially autonomically. Not everyone lactates. That is why it is important to have these checked out. I dealt with all insividually for 23 years until I was diagnosed last year. I do have all medical records for all those years and have been able to present them to Dr. Low and other specialists who agree that the ;lactation/pituitary is impotant NOT to dismiss. Just my opinion. However on Vanderbuilt as well as the NIH web sites Miriam

The fire in us never goes out....it may flicker, we are too powerful a force for that. Take breaks when needed,, never question your power, fire, we are differnt than we used to be. Some days I am a slug others a somewhat competent wife. Even if you are the last one on a subject please continue, I read when I am on, and will reply. I promise. Miriam

This is an awfully large club we belong too, the MENTAL PAUSE" club. I too have this problem. I did research and found that Vanderbuilt as well as other centers that treat this disorder use ritalin for this problem. I have been taking it for a while now, must say it really does help. I STILL HAVE POTS so the problems still exist, but am more aware and therefor able to deal. I did have the neuropsych testing 2x once on ritalin and once off. I definately was better on. You will find this info on many sites. This is a personal decision, but it makes me feel like a slightly more competent woman. Also you might want to keep extra sheets for your massage at work and make sure there are doubles of things that if you don't have make you "pause"!!!!!!!!!!!! Helps me Miriam

<{POST_SNAPBACK}> Hashimotos is also caused by pituatary gland and thus the lactation. Not all are the same, and QUITE often the adenomas are too small to see. So treating the symptoms is inportant. Most women with pots have had heavy periods which end up being slow to non- depend upon their individual case. Miriam