LilySnick12

hi all. it's been awhile since i've posted (let alone been on Dinet what with classes and not feeling great ) but I recently came across some interesting links that I think should be shared. Below I will post the links. Mystery Diagnosis - POTS episode. (When you're finished watching part 1 you will have to look in the box to the right and select part 2. Then after part 2 there is a part 3.) http://www.youtube.com/watch?v=NN3PB6N6oGY This one was interesting. I'm not sure where it came from but it's supposed to be an "awareness and hope project". It had some really good information and was kinda interesting. I'm sure most of you have the last link that I'm going to post- but just in case I'm gonna post it. It seems to be the best place for information on POTS and dysautonomia (that I've found). http://www.potsplace.com/

So far so good. The preliminary reading on the MRI came back okay. I won't know details until Wednesday at the earliest. But taking this all as a good sign so far. Still not sure what's causing the seizures or how I got the hypodensity (low density area or light spot in the brain) but maybe time will tell if not the next few drs appointments. Any ideas on causes of focal absent seizures or hypodensity is welcome. Feel free to PM me. Thanks everyone.

Sunfish, Our thoughts and prayers are with you. Asking our great Physician and healer to guide your earthly doctors. May you be surrounded and uplifted by love, hope and faith and feel HIS comfort. Thank you so much for your honesty and sharing your heart with us. You have touched many lives! Your courage and conviction is evident in all you do. Your love and compassion will leave a lasting legacy on many hearts. Again our best wishes for a speedy hospital stay and prays for a rapid recovery.

I've been having severe abdominal pain. So severe that I nearly pass out. I went to ER and they did x-rays and can't find anything. (Abdominal migraine was mentioned as a possibility) I've had my gallbladder & appendix out already. Last week I had a sinus infection with the headache becoming more migraine in nature. Now I am having what they are calling FOCAL SEIZURES. I lost track of time and couldn't complete a task like brushing my teeth....Id just zone out. The headache is better, but I had another "seizure" today. My Dr sent me to the ER for a CT scan of my head. The ER Dr said it showed a hypodensity but wouldn't (or couldn't?) explain what that meant. She just said they didn't know and I would be scheduled for an MRI by my Dr. Has anyone else experienced this? Any idea what it is? All I could find on the internet is that it means a "less than normal" denisity and that it could be a tumor, bleed or result of a head injury. Tomorrow and answers from my family Dr seems so long to wait! KT

Tearose, I believe that God allows people to come into our lives for a reason, a season or for a lifetime. Sometimes they come into our life for a short time. Maybe we need them, or maybe they need us. Than for no reason or through no fault of our own they leave. Sometimes we may even have to make the choice to let go. I had a "well" friend who was blessed with good health for herself and her family and didn't get my daughter's POTS. She asked me what my daughter had done that was so bad that God was punishing her in this way! My reply: absolutely nothing! I don't believe God spends the misery wheel and randomly chooses a victim or punishes us like that. I do believe God allows bad things to happen, even to good people. I know that he gives us the strength to endure even the most difficult events in our life and uses them for our good and His glory. "For I know the plans I have for you, says the Lord. They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11 Your illness gives you a greater compassion for the suffering of others. You have probably offered advise, and given support or encouragement to another. Maybe our health information will lead the way for research to find a future cure. Sometimes we don't have any idea of the impact we've made on another persons life. Long story short.....don't feel guilty about letting go! It's not cruel or mean: sometimes it's just plain self-preservation. If they are draining your emotional & physical energy it's harmful to your health. Praying God will send you a true friend to cry with, share with, pray with and just pour your heart out to without fear of being seen as weak. A true friend loves you inspite of what illness you have or who you really are. I'm always telling my daughter: POTS IS WHAT YOU HAVE.... NOT WHO YOU ARE! So you can define what it is or let it define who you are and who you become. The choice is always yours, choose wisely! God bless you! Paula

From Lilysnick12's mom Regarding the Mild Hyperbaric Therapy. I have discussed this with our PCP and she is reserching it too. So far she thinks it's worth a try. I'm still unsure. I went on line and found this website www.hypertc.com. which explains its usage. I have also sent inquires to several of the Association and sites listed to see if they had study info specific to pots. I'll keep you informed if I can get the study info. At this point we've not made a decision to go ahead and I'm not sure what we'll do. The chiropractor is a friend of my sister's and we do know him. I'm going to talk to him to see if his training was through the local hospital or the company it was purchased through. He has offered to accept whatever payment the insurance provides or he will do it free of charge if our inurance won't cover it. I'm planning to contact her Dr at Mayo to see what they advise too. Thanks for your input.

I can't take the iron supplements orally ....I get bad stomach pains & the dirrehrea too. My Dr gives me a b-12/b-complex mixed injection weekly. (there's also another component they can add to it to help with weight loss which my mom gets to help her thyroid weight gain and her fatigue) This has been the best energy boost for me. Also she stopped my periods so I could get my iron built back up. I did try the Femiron which was suggested by my pharmacist....it was better that the pure iron supplements but I still couldn't tolerate it.

Mary, You'll find the best friends and support right here! People don't understand and often it's our friends and family that are the worst offenders. My daughter has referred to herself as the invisable teenager, because your friends often forget about you. My 17 year old daughter has POTS.....her dad's still in denial that she is sick. When we were at Mayo Clinic in 2005 they kept repeating, Sir you do understand this is real and that she is sick don't you? Four 4 years dealing with the school and staff that didn't believe us. The best advise is to keep your explanations very simple....my blood pressure doesn't regulate itself. You'll learn that you need to put your energy into taking care of you and not be so concerned about what others think! You may not always be able to clearly define your illness to others, but you can choose how you let the illness define you! In my daughter I see a greater maturity, compassion for others, stronger faith, preserverance and a great strength of character beyond her years. Wishing you the best, Paula

Our thoughts and prayers are with you! Sorry you are having such a difficult time with Doctors. Been there, done that, shed the tears. My daughter is 17 and had been ill since she was 9. We went to Mayo Clinic in 2005. Just by reviewing her medical files they already knew she had POTS. We went there and they ran a few additional tests which all supported that. What a relief to know it's real and you're not crazy. We had seen many doctors locally and where told it was because she was a menistrating female or it was anxiety, common in the teen years. I even told a Doctor that if he gave them that line I'd slap him! U of M Hospital Ann Arbor, MI Dcotrs has been wonderful. Also, we found a great PCP who is willing to try alternate treatments and is willing to learn. We take her POTS info and she does review and research it. They key is our Doctor cares and she listens! Unfornately today with the HMO insurance we often get take a number, cookie cutter care. We are doing massage therapy to help with muscle pain, and B-12/B-complex weekly injections to help with the fatigue. Having a support group to vent also helps!

According to my daughter's Doctors at Mayo Clinic POTS and CFS are two different diagnosis. My daughter does have both Pots and CFS. The symptons are similar in the fatigue and tireness. She does take naps whenever possible. The key for her is to pace herself. If she is overly active and pushes herself, she'll be down for days after. She has been having success with massage therapy and is also getting weekly injections of b-12, b complex, which does help to boost her energy level. She also is monitored for annemia. She pushes fluids mostly water, as gatorade and the additional salt intake doesn't appear to be much help for her.

A local chiropractic doctor sent us information that he is using a hyperbaric chamber to treat two of his patients who appear to have pots. He wants to work with me. He feels that the chamber use will help ease a lot of my symptons. It is being used on patients with Chronic Fatigue, Pots, add/adhd, etc. It's suppose to flush toxins from the body and send more oxygen throughout the body, which should help the pain. ( especially the leg pains from the blood pooling in the legs, etc.) Has anyone else tried this? Any there any known risks involved? I'm interesting in learning more. Please advise..We're thinking of trying it. (My daughter is 17 and has been sick since she was 9, she was diagnosed with POTS in 2005) Paula

Angelika- I have a Chiari I Malformation and my advice to you would be to go to a neurologist and a neurosurgeon. Since it's not a Chiari II it may not be anything that will effect you. For example: all that came out of my Chiari I was migranes and headaches. Nothing big. Many ppl with Chiari I don't have any problems and sometimes you can grow out of it (like me) or its small enough that it won't bother you or make any difference at all. Feel free to PM me with any questions you may have (sry in advance if it takes me awhile to reply, as I'm not on much). Hope you feel better!

I'm so sorry about your son. I understand what he's going through (as I'm sure most of the people here can also). I've had POTS since I was 8 or 9 (I'm now 17) and have had to go through (and still am going through) problems with the school, doctors and people who just generally don't understand and have no concept of how hard it is to be so young and have such problems. If you need to talk or have questions, please feel free to send me a message (or you can send it to my mom at this account also) and we'll do whatever we can to help. Good luck!

For those of you with POTS who can't work, attend school, etc. regularly- how do you cope with the boredom? I know that for me, its hard to stay occupied and at the same time is hard to have the energy to do something entertaining. Books are always good, and there's tv and the internet; but what "boredom busters" do you use to cope???

I am 17 and have had POTS since I was in 3rd grade. I was told at Mayo Clinic that it is possible that I have an adolecent version that I may grow out of by the time I'm 25, or I may have it forever. There isn't a definate cause, but we think I got it from having mono (epstein barr) so many times (yes, I've heard you can only get it once, but I've had it 3 times). I'm not that tall (5' 2") and average build, so not overly tiny. I haven't grown in a few years. Any ideas??? Thanks!

tessa: i have been tested for celiac. (3 times, all negative). i have also been tested for sensativities and allergies. I am allergic to orchard grass (?), egg yolks, peanuts and peanut products. Thanks for the advice though. ;-) thejohnsongang: I live in Michigan. Thanks for the links. I'll go look at them right now! :-D My parents have talked to the school and so have my diability advocates- it seems to make no difference. We were told by my advocates that unless I planned to go an extra year (I'm supposed to graduate this yr) that an appeal would do no good, since it may take 2 years or more to process. :-( Any help or advice you have is greatly appreciated. It's frustrating to say the least.

I was just wondering how you know what type of POTS you have? I have POTS, but was never told that I had a specific type. Other people I know with POTS say the same thing. What are the other types of POTS and how do you know which one you have?

foods that bother me: really rich foods like pasta alfredo, too many dairy products close together, some spicy foods, popcorn (especially the kind with extra or movie theatre butter) and some types of potatoes. interestingly enough- i've heard that some foods are not related to the pots or to food allergies but to your blood type! (look up blood type diet and find your blood type (if you know it) for more info. if you don't know your blood type but u've had sugeries before then look on the surgical reports (that's how I know mine). Masumeh, most chocolates (if not all) contain milk. If you want to eat chocolate without milk you should buy the special one for people who follow a Dairy free diet. You can also drink soja with chocolate tasting (but only the one without dairy). BTW, I also read that Dairy can trigger our symptoms (POTS), as well as eating to much sugar can lower our bp. love Tessa P.S.: Sensitivity to gluten and casein changed my life and my diet.

I have low vit. D and I was prescribed 2000 i.u. (international units) of D. I guess the i.u.'s are different doses that mg, g, etc. and therefore what seems like a lot is actually not the amount u would think.

Actually, I have a 504 in place already. Unfortuantely it is up to the school as to how to use and interpret it and the extra funding it brings. My doctors (all 7+ of them) have written notes to the school and everything but it hasn't seemed to help. When the school recieved a letter from my doctor (on their own stamped stationary), saying that I had immune problems and listing many other things and that I could not drive or do traditional school days. At this time I was already "out" on homebound. The school interpreted the letter as that I was doing too much and should drop some classes or drop and out come back next year. My dilema is not getting the proper paper work, it's getting the school to use it and comply with it for my benefit- which they don't seem to think is important. Thank your for you help though.

thanks for the advice. i've already had to change some plans. i wanted to be a pediatric D.O. but that's not going to happen so I'm looking into becoming a pediatic oncology therapist (like physical therapy for kids with cancer who are in the hospital). I'm supposed to have more than enough credits to graduate this year (under the 504/IEP) with my class (but the school keeps taking them away and changing my grades which I don't understand how that's even remotely legal), so I told them I'm willing to do online classes and summer school. But I don't want to be in this school any longer than I have to- especially if they aren't going to help me- or even be nice to me. We would sue but we can't find any lawyers who are willing to go against my school. All of the lawyers we call say that I have a great case but to talk to someone else.

wow. so many things to respond to. momtoGiuliana: Yes, I have been officially diagnosed with CFS as well as POTS. lthomas521: I have been tested 3 times for celiac disease and all three times I have tested negative. But I do have food allergies (egg yolks, peanuts and peanut products and something called orchard grass), so I am careful of what I eat. jhjD: I have contacted the local advocacy and unfortuatly they were unable to do much other than to recommend (unofficially) that I file complaints at the state level that could take up to two years to be processed- in which case I should (hopefully) have graduated (although the school doesn't see it that way). I have an updated IEP, a 504 as of this year (I've been requesting it since 6th grade), and my advocate and doctor tell me that I have a "hidden medical disability" because of the CFS, POTS, and immune issues which they say is also recognized by the state since I have a temporary handicapped parking permit. I have been keeping written records as well as keeping some nasty messages left on my personal cell phone from the school staff. There are many, many other issues with the school that I will not get into here, but even though we've been told by many local lawyers that we have an excellent case, no one is willing to take on my school. (I'm told it's the 2nd richest in my state) and that I need to contact a special education lawyer (good luck, there are none within an hour of me, and even then it's hard to get through and phone calls/e-mails aren't returned). I don't know what else to do and my parents are extremely frustrated also, but it would be a waste to switch schools so close to my graduation (or when I'm supposed to graduate). Any further advice you may have is greatly appreciated. Thanks everyone for your help. It's hard to have so many things at once and not know if they are connected or have a doctor who is familiar with POTS. If I was allowed to drive (state law prohibits me from driving within 6 months of my last seizure) I could drive an hour to meet with a neurologist who is familiar with POTS, but other than him I haven't heard of anyone else within a resonable distance from my home that my parents wouldn't have to take off work for several days to take me. If anyone else has any knowledge, advice or comments I wanna hear 'em! Lol. Keep 'em comin'!

I was just wondering if anyone else with POTS has any of the following, or if its just me? (Please bear with me as its a long list and I may forget some things) Also wondering if there are any ideas into what some of these are or what causes them? (I know some are from the POTS). I have had my gallbladder and appendix out (with an infection after surgery that went untreated because "I didn't know what I was talking about. Redness, etc. is common) , a rib-resection, chronic abdominal pain (unknown cause), iron deficiancy anemia, chiari I malformation, trouble breaking down milk sugars (huh?), migraines, periods that are very painful and never end (my last one was 3 months straight and only stopped a week ago), food allergies, medicine allergies, ovarian cysts, trouble absorbing vitamin D, excerise intolerance, asthma, dizziness, chronic fatigue, seizures (unknown cause and type- they started 2 months ago), back/neck/shoulder problems (muscles are too tight and knotted even with massage therapy), low resistance to germs (I catch EVERYTHING), lower back pain, fluctuating appetite (some days I'm very hungry and some I can't stand to be around food), sleep trouble, nausea, brusing/breaking blood vessels easily, tiredness, no stamina, memory trouble, "brain fog", low urine output (2-3 times a day), "no" immune system (my dr. says the = of a chemo patient :0 !) ugh... the list goes on... I'll stop posting symptoms now since I'm actually having brain fog. Lol. I do feel the need to mention that I'm not very old to have POTS (I'm not quite 18), and was ALSO wondering if anyone had any advice with how to deal with the school. (Mine thinks I'm "not sick, and I just keep making up things" and has never heard of POTS. They also think that I don't "deserve to graduate, since I haven't had to work as hard as the other students"!!!!! UGH! Lol. That's because I've had to work HARDER! Ha ha. I'm on homebound and it's tough. I'm basically self taught and the "teachers" are no help...) Anyway... I'm rambling so I guess I'll stop writing and wait for the replies that I'm sure will be very interesting.