katsusu

I went to doctor wanting Zotran (the anti-nausea medication that was posted here. I went to the doctor wanting that butendedupwith KYRIL_ 1mg. The doctor said they are basically the same. Anybody knows if that is basically true? Anybody has had any experience from it? Does it work? Any thing i should know> Is Zotran better? Thanks Kathleen

HI, The way you describ your neck going up and down it sounds more like intenitional tremors. Most PD patients do not have their neck being the first place to have tremors- some have redigity/stiffness of the neck, but I have never known anybody mention their neck tremor that much. Do you have any other symptoms - to go with it? Also, in general PD tremors may not directly effectedby massage, but would get better through the body relaxing. Of course this is just my thoughts about PD-I have had PD for 13 yrs. Kathleen

i found that i have a range which i feel comfortable- which is 85 and below when sitting - and 108 and below when standing. I fluctuate between that -always staying POTSY- meaning no matter where I start - I will always go up 30 points. I have learned to live within this range but what gets me frustrated is that doctors misunderstands POTS. I have found that they associate the tachycardia part of POTS with normal tachycardia- so no maatter how high the pulse goes it is normal for me because i am tachycardia. i went to the ER the other day and my pulse was 129 and raising when the tech. stopped taking it and wrote 112. (which was high -still) - but the doctor (who knew me from the past- did not pay any attention to it because i was already dx with poTs- they only see the tachycardia in it and assume that it is normal.. Most doctors do not appreciate that POTS acting up -pulse increasing - is usually telling us something is going on in us that is abnormal- from a cold to having your period. Also that checking your pulse does make you act the way your no. is but it tells me that usually that my pulse matches how i feel. Not to change the subject but has anyone had problems with low blood count? Kathleen

A few things that might or might not help- 1- Any kind of medication that effects your blood pressure of pulse will effect you- like sleeping pills- anti-depressant - novacine at dentist office - POTS can make a person very sensative. so any time you have a new med or giving a shot of something - look up the interaction. If it says can effect bp or hr -it is likely to effect you. 2 - At the begining you feel alot of ups and downs fluctuation - emotional and physical -this is normal because you are getting use to the idea of what is happening to your body. POTS has a way of getting into all parts of your life. Take your time to adjust- learn what is POTS -how it effects you- what triggers it- what you can do and what you can not do. Remember that it can mess up your thinking- your focus- make you very tired, effect your emotions-and i just do not mean boohoo you feel sorry for yourself but it can mess up the chemical balance in your head and cause you some depressive feelings that are there because of POTS -not because you are weak. I feel knowing this is important because knowing that i was losing control because of POTS and not because of me being weak meant alot to me. It meant that i could still have my self respect that it was not my fault i was having such bad feelings. Anyways- thats how i felt. 3- Remember that sometimees you may feel bad because you are having a bad day- a cold - stressed because of life- tired because you over did it - it is not always POTS fault but just living everyday life, BUT what effects you -now effects POTS. What i mean is that if you over did it today and feel really bad- it does not mean POTS just got worse but it does mean that POTS is worse because you over did it besides that you feel tired because you over did it and now you have to pay the price for over doing it. So pick your battles carefully and only over do it when it is important and give yourself time to recover. 4 - tomorrow is another day. if you feel real bad pne day -one hour or two- don't always fight it-sometimes you need to give your body a break and lie down and rest. Don't feel guilty- won't make things better- just know you will feel better the sooner you rest. 5 - learn about how POTS effects you- get a pulse watch and know what is your normal range and what is abnormal. Learn what your body is saying to you and find a doctor which will respect your input about the POTS part of you. Thats all for now- hope it helps

Having Parkinson's Disease (PD) for 13 years, then having unknown illness of POTS for 2 years before I wass dx - now for a total of 4 years. Having brain and backsurgery, pre-term pregancy with bed rest for 3 weeks in t he hospital. Being 2 times to NIH for 2 weeks as a research subject- and countless of hoursat doctors, on-line and wondering about what is going on in me- has brought me to where I am. I like to call myself a professional patient. I do not want the title to be looked as if i was a weak -sick person but I look at myself as - the bull stops here- I know what i have -I want to be treated with respect and as part of the team. Because when it comes to who knows whats going on day to day and unless the doctors are planning to coome home with me- I need to know what is going on. Now this might sound pushy,but remember I have known about PDfor 13 years. But PD has never been as bad as the 2 years that I kept going to the doctor because i was dizzy, fatigue, and nauseus all the time. All the time that I went to ER having chest pains short of breath. And instead of getting answers I was sent to the psychologist because i must be making up the symptoms. But do you know the doctors that gave me back my self respect were the psychologist- I ended up adoring them because they gave me back my self respect. If you ever need help- try to find a good one and open up and let that be a place where you release your feelings. And let them help you -understand that what you are feeling is normal under the circumstance. About having POTS and PD- for me it is confusing and lonely because I am 1 of 2 known people that have PD/POTS. I have my good times and bad times. Right now POTS is a bigger head ache to me but in the futureI know PD will take over that role. The biggest lesson I have learned is to accept who i am now- by giving myself to mourn the old me that could do anything she wanted -and accepting this new me that is very limited inher activites. When you learn to do that you can start enjoying life with in your limits by concertrating on what you can do and not worring about what you cannot do it. Try to live with what you can do and be proud of that. This is the first step in finding happiness and making your lifeworthwhile again. I never saidit would be easy- but it can be done. And remember- you will always be something inthe path of life that will trip you up-which willmake you feel bad about yourself, but that wiill happen to you with or without POTS. By the way- I live in Germany, my husband isthe US army stationed over here. Hope this will help some of your attitude about being sick. you may not be able to change the illness but you can change theway you let it control your life. Don't give it total power of control any more. Kathleen

HI, This must be an awful time for you. I know the emotions you are going through must be driving you crazy. If you do not mind Iwould like to suggest eome different ways to think about the situation and different ways to handle the situation. They are not taken from being pregancy and POTS but it was taken from my experiences of bed rest andpregnancy, brain operation and Parkinsons disease and POTS-- back surgery- living with POTS amd back surgery. First- when i was in the hospital for back surgery the doctor gave me this new anti-naueua medication that actually worked- i was never able to take pheregan>always made me sick. But this stuff worked -the name is DOLASTERON- but it is only available in Europe - I think. But the pharmacy at the military hospital said this was the American version ZOFRAN -I HAVE NOT HAD A CHANCE TO TRY IT BUT - i look up both Phergan and Zofran - for pregnancy and they had he same kind of warning for pregnancy- i think Zofran might be somewhat safer- one thing for sure it does not have any warning of effecting BP or HR as the phenagan does. I dont even know why doctors give that to POTS patient when it says it effects the BP so much. Anyways it worth asking about. 2nd- why don't you ask the doctor if you can come in at least once a week get a fill up of IV flid -to be on the sasfe side. To make you feel better amd prevent contraction. 3rd- When i was pregnant with my 2nd child i had early contraction and had to be on hospital bed rest -only allowed up for the bath room. I was not happy at first but then changed my thinking and said that if i need to do this for the baby- ten i will do it-and started changing my attitude. Because i knew it would be over one day. I wrote a paper one day-which I called TIPS TO BEING SICK- one of my advice was if you are sick and know you will be feeling bad for awhile instead of fighting it and making it worse- start changing your attitude and enjoy it. why make life more miserble for yourself- findthingsyoucan do- watch tv- call old friends - do little projects at litle ime intervals - lying down- ry not to change the position to much so it does not give you so much fluctuation on how you feel. know when you feel better or when your bad times are- don't get over heated - basically learn what you can do and what you cannot do, If your parents are willing to help you- take them up on it- put pride and especially GUILT away and only think what it best for the baby. Rest - and take care of yourself and remember -even if you have the next 6 months in bed-it is worth it to get an healthy baby at the end. Basically give yourself permission to be sick. Have you ever notice that one of POTS peoples biggest problems is that we do not give ourselves the permission to be sick-we fight it so much that wwe sometimes make it worse- we get anxious- wew get depressed- instead of realizing that sometimes POTS will act up and that sometimes wew just need to rest get through it and get better for another day. I am not saying give up to POTS but know when to fight your battles and when to not - but you have to think now that you are not in the position to fight POTS now-but in the position of protecting your baby from POTS and what it does to you, so for the next few months you may have to give in to POTS where you use to fight it- meaning take it easy - just to be on the safe side. Don't do things that you know POTS does not like. By changing your attitude in the way you think about POTS - changing it to you will beat it instead of it beating you- you take alot of pressure off youraelf. I hope this helps . it is all things i learned from experince. Kathleen

HI again, i thought it was time I told everybody about myself. Michelle knows myPOTS story because when there was no forum and when POTSPLACE was not such a big site-about 3 years ago . Wonderful Michelle my life saver and answered my letter that was was fullof questions i was trying to understand. She has been a source of strenght for me and alwayshasanswered my pledfor help- so thank you Michelle. My POTS is somewhat different from ,right now, anybody else because i should not have it. I should be orthostatic hypotensive because my primary illness is Parkinson's Disease. Which I have had 13 year now- I am 43 yrs old. People with PD-often (usually)) start losing thier sympathatic nervese to the heart and start becoming hypotensive, (according to Dr. Goldstein from NIH). They found this out by takin PET scans of the heart and seeing PDpeople with less sympathic nerves- with POTS people they have normal sympathic nerves of the heart andother organs- which makes sense because the sympathic nerves is where you find adeniline (NA) receptors. Let me back up for a minute- i found out after 2 painful years of goiong to doctors for nauseuea and lightheadness that i had PPOTS> It is when i was getting a brain surgery (3 of them) for PD. I was getting a deep brain stimulators put in. During that time i almost fainted and did faint later so they started taking orthostatic vitals 2 times per day- they saw the POTS pattern and figured it out. Later -i stated reading Dr. Goldsteins work on ortostatic hypotension and PDs- iwrote askinghim where i could find info on PD and POTS- he said he never saw anybody with the 2-did i want to be evelauated. Of course i went for it- found out indeed i wwas following in PD foot steps and had lost some sympathic nerves to my heart but i also showed in the table tilt test that i was POTS, too. How was it possible to have 2 opposite illnesses? actually there is no answers yet but=============== I will write part 2 tonight- have to get ready for doctors appt. now. Kathleen

I was just wondering if colds effect other peoples POTS- making it worse and making me feel like i cannot handle the simple cold. I was also wondering - what is concidered to high as a pulse rate? I know everybody has different limits and can tolerate different pulse-but is there any guide line for what could be bad? Has anybody gotten a good answer from their doctor -why POTS patients will have chest pains? and even if it is not because of something being wrong with the heart - can it be dangerous? thanks Kathleen

HI, This is the first time i have written but Michelle has posted for me before. I am Katsusu or Kathleen. Michelle had asked for prayers for me due to an surgery i was due to have. Welll, i have had the 1 st surgery of a 2 part surgery and am happy to say that i came out of it very well. in fact better then expected by everybody including the doctors. I recovered better then most his patients. I had a cage put in my L4 L5 and S1. I am going to have the cartiledge replaced next time. I know everybody is wondering how the POTS did. Well, due to doctors that listen to me - read the information i gave them - and did research on POTS themselves- POTS did very well. It was so nice for the doctors to listen to me and even ask me my recommendation about POTS. It took alittle time to recover from the surgery- the doctors kept me in ICU - over night and pumped me with IV fluid - kept pressure hose on my legs and kept me lying down flat for the first night. I think that helped me body recover without the POTS getting in the way. I think that was the main reason that i did well. The POTS did act up sometimes - especially in the morningsand after meals. But nothing that bad. But what was weird was one night the IV infusion they were giving me -that inflitrated my skin . My arm became cold and swollen. I noticed it right away so the nurses could fix it right away. But about 5 mins. later I started feeling my pulse go faster and started feeling light headed and nauseus. I knew right away POTS was reacting to what has just happened to my arm. But did not know why. I had the nurse call the on-staff doctor but quickly realized that he did not know or understand POTS - and I basically told him so. ((Ops)) I did not mean to be rude but - it just happened. Next day i told my doctor - he did not know why it happened but later i figured out why POTS acted up- and was able to explain it to my doctor- whoagreed with me. My thoughts were that if POTS is basically my autonomic nervous system reacting to things that happen to my body the wrong way. It did not like what happened to my arm and it started reacting the way it knows how- by over reacting. It kept over reacting -increasing my pulse- till my arm went back to normal -the next day. i actually learned alot from this experience- I learned how my body is so sensatives to any negative influnce. I have a cold now and POTS is making me feel worse then the cold. Ialso am learning people with POTS just don't feel bad for nothing -but if my pulse is up -that usually tells me something is going on. But the medical field does not understand that a few points up or down can effect me - so what could be a normal blood pressure with a 90 to 100 hr while sitting -might not be to bad for some people but to me it tells me POTS is up because sitting it is usually in the 80s and when really good in the high 70s. When i am in that range - i feel pretty good. When i get up higher nos.- I feel bad. Anyways, what i wanted to say is thank-you for the prayers and know your body and how it reacts - so you can teach the doctors. Thanks Kathleen