Kitsakatsa

Its been a wonder drug for me. You might be able to see earlier posts where I was trying to transition onto it and was asking everyone for their advice and if it was really worth it. After I got to the full dosage, things turned around and I feel the very best that I ever have with this. It has worked for me, and it has enabled me to exercise again (is that good? oh.. I guess so!

I have kept Excel charts and graphs for my doctors and for when I went to Mayo. I was able to show data that coorellated with nausea levels and activity levels. I think that it can really be a useful tool. Here is what worked for us: Going across from left to right: Date, Time, Activity, BP, Pulse, Nausea, LHeaded, Cognitive, Headache, Shaky, Chills, Vis/Sound, Flulike, Fatigue, Dizziness For the 10 symptoms I experience, I entered the severity: 0-Symptom Absent 1-Symptom Present 2-Symptom Moderate 3-Symptom Limiting 4-Symptom Debilitating From there, you can graph them quite easily. I even made an additional row to combine the AM symptoms, then the PM symptoms. I made a graph of AM nausea vs PM nausea. I find this is good because it is such a hard syndrome to explain even to docs who are trying to understand. Also, it is easy to get buried in paperwork with this syndrome and it is great for docs to see at a glance what you are talking about. Also, you can see for yourself the rise and drops that you experience!

To make meals I have a barstool. My parents bought me big comfy barstools last Christmas. I have two in the kitchen and I use on when I cook. The other I use in the bathroom to sit while I do makeup and hair (usually a ponytail!). I have found that it is challenging to cook, but I stick with smaller recipes like Cooking Light's 6 by 6 and other recipes with few ingredients and little time spent over heated burners. I'm still working on it, but everytime I can actually cook a meal- I feel like I have conquered the world!

I went to both. Mayo in Arizona, Mayo in Rochester. We should have saved ourselves time, money and a year of sickness and just went straight to Rochester. The advice from Scottsdale (stuck me in with Cardiology) was misleading and we spent a year of trying their suggestions without success. I went to Rochester and straightened everything out. I feel much better now. In my experience, the people at Roch know their stuff, the people at Scotts do not. At Scottsdale, you have to see an intake doctor and he had never even heard of POTS. Therefore, the rest of my care was probably doomed- oh yeah and I had to see a resident! The cost of Scotts was double that of Roch. Skip the hassle- why would you go to a clinic that takes their research from another clinic when you can just go to the real thing? It is closer to me- but not worth it!!

I have a question for everyone: have you ever experienced a worsening of symptoms shortly after arriving at a high altitude location? I went camping in the high uintas (Utah) this last weekend and felt dizzy sick on the way up (too many curvy roads!) and then progressively worse for the next two days. It got to the point where I could no longer sick upright and I had to take a large amount of IM Zofran for nausea. Now two days post visit, my BP is still low but starting to climb upward after 3% infusion and lots of bed rest. Has anyone experienced similar? I have searched through the research and can find alot about ANS, catecholamine levels and deterioration of cardiac output at high altitudes but nothing specifically about POTS....

I had to start with 5 minutes a day and cardiac rehab, which moves you very slowly through muscle-building exercises. I am now up to 40 per day with the help of Mestinon. I was deconditioned to a point that the walk in from the car would make me dizzy and sick. I didn't exercise much for a year and a half. Now I am at the point where I can. I do resistance instead of endurance and it is much easier on the POTS symptoms. Isotonic exercises are recommended where you learn how to breathe and build your stomach muscles. Large medical centers usually have all of these things in their rehab centers. I had to build up though, and it took some time. Best of luck!

Nausea is my main symptom. I have felt less of it recently. This is what I take: Zofran IV or IM (shots you give yourself in the hip) Compazine 3% Sodium infusions with Zofran 10mg Nortryptiline The last is very recent and I think that it has helped considerably. According to a Mayo GI doc, it reprograms the signals sent from your brain stem. It took about 2 weeks to work and then the nausea slowly went away. For me it worked. For others it may not. I drink gatorade and gingerale. The sugar in gingerale sometimes makes the nausea worse, so I mix perrier with ginger spice and it works wonders. I hope you find a remedy soon. There is nothing like nausea and no one seems to understand. I am just emerging from the cloud. My prayer is that you will too!

Thank you everyone, this is day two and I decided to try taking 1/4th (15mg) once or twice a day for a few days and then slowly increasing. I feel about half as wierd this morning, but still really displaced. I'm surprised because I'm usually not sensitive to medicine. Does anyone take this in combination with Florinef, Nortriptyline and Provigil?

I've read all of the posts about Mestinon, but there is not alot about everyone's first day. Did anyone else have a bad first day? How long until you started to feel the benefits? I feel like I am in a fish tank and my head is really hurting. I feel nauseated and starving at the same time and like I am floating beside myself- kind of like how you feel at the beginning of the flu. How did you handle this? Reducing the dose? Sleeping alot? Anything would help. I have alot of stress at work from taking a week off and need to be at the top of my game!! Thanks!

I am a neat freak too and my frantic times are when I have a messy apartment and am too potsy to do anything about it. Here is what has worked for me. 1. I make a list of everything that I would normally do in an extensive cleaning. Floorboards- everthing. 2. I split it up into days of the week with one day free for "accident repair". Accident repair is if there is an incident in the apartment that just cannot wait. It gets priority for that day or the next. 3. I tackle only what is on the list for that day. It usually only takes 15-20 minutes. 4. I only vacuum on a good pots day and leave that one to chance. I spot vacuum as needed. 5. I practice the 3 things rule every day. Before you leave a room, put 3 things away. Sounds boring, but it works! You will see me hopping around with pills in my mouth and putting away 3 things before I can get water, or go potty or anything. 6. Then I relax. If something is not perfect, I know that it is on the list to make perfect on another day. If I am on schedule, I can allow myself the peacefulness and contentment to be free from guilt if something is out of place. 7. I organize to relieve stress. I take pet projects. A drawer. A closet. I don't get overwhelmed with dismatling it totally, I just keep it in mind and pick up stuff to organize it when I'm shopping. www.thecontainerstore.com is great and pots friendly (internet shopping). Before you know it Whola! If anyone has cooking tips, let me know. That is where I really need help!

I'm entering into a remission. I was diagnosed with Florid Pots in Feb 04, had a 2 week remission in Oct 04 and March 05, now am in a remission that has lasted 3 weeks. I'm one of the virals. I have hope that this remission will last a long time. I still have symptoms, but they are far more manageable and life is normal as long as I'm careful. I'm keeping my fingers crossed!

I'm so sorry to hear about your plight. What a hard time this must be for you. I owe the US govt nearly 80,000 USD in student loans that I have to figure out how to pay, I know that loans may not be an option for you, but I can relate to your financial struggles. Too bad there is not some really rich Queen with POTS and money to start a foundation of some sort. Of anyone that deserves a break- its you! I am happy to hear about your hair though. I think it was thoroughly the right thing to do under the circumstances. I have wanted to do the same thing for a number of years. Good things happen to good people. You will get through, although it may not be clear right now... (kiss on cheek) Kit

I have had trouble this week with insomnia, like some of you and I took lots of compazine and ativan last night to get to sleep. Well, the drugs really worked because I had the most vivid dream. I was at a huge reception and there was a gift shop. So, of course, I am dying to go shopping, but I thought that first I should visit with a few people. It was in Denver and it was a really pretty glass mountain reception hall. I kept hearing "pop" every once in a while, but then realized that it was more like "smack", so I kept hearing this and was walking around to try and figure out what the smacking sound was. Talking, visiting and "smack", but I couldn't see what it was. I was visiting with a few people when I suddenly found myself on the floor. Smack! Then in my dream it all came clear. I was at a POTS reception and the "smack" was everyone standing too long and hitting the floor just like I did!! Someone must have mentioned some get together in a post somewhere and it stuck in my brain. Anyway, I think if that takes place, everyone should bring a chair- because this dream was soooo lifelike!! I hope that no one is offended by this, I just thought that it was funny that I would dream such a thing!!

Here's My POTS Ipod Playlist: I had to do something during those long IV Therapy sessions! "Medication" Garbage (also the lyrics of ...I fall down just to give you a thrill..prop me up with another pill"!) "What's The Matter Here?" 10,000 Maniacs "Fallin'" Alicia Keys "Don't Worry Baby" The Beach Boys (to be listed to after "The Warmth of the Sun") "Children of the Revolution" Bono "When Your Heart is Weak" CRobin "Baby Be Brave" The Corrs "Coconut" Harry Nilsson (.. I said Doctor is there nothing I can take?!.. put the lime in the coconut and call me in the morning!) "Too Much Food" Jason Mraz "Dracula's Castle" New Order (think about it, he was pale, always laying down, wanted blood and hated the sun and garlic!) "Domino Dancing" Pet Shop Boys (that's what would happen if I tried to dance!) "Blurry" Puddle of Mud "I Kicked A Boy" Sundays (specifically, and ER Doc) "She Blinded Me With Science" Thomas Dolby (just for the clueless docs) and lastly, "Everybody Loves a Happy Ending" Tears for Fears

I take 3% IV once or twice a day, high salt foods and salt pills when my stomach will tolerate. I've been told to shoot for 10,000 mg a day. I can go on a lower salt day, but pay the price the next.

I tried to fake a tan with the L'oreal spray stuff. Ya, POTS pt trying to have a normal life here! Oh man! What a big mistake! All that I can say is thank goodness for medical hose to cover up the tragedy and I am no more for the tan experimentation. Other than that, I have nothing to contribute to your question. Just that if you try and attempt the tanning stuff, remember that you have to stand to do it and blood does not get to the part of your brain that reminds you to make it even or comprehend the directions or anything and then you can't sit down until it dries. I just hope it all fades before I go to Mayo or they'll try and treat me for a whole other neurological disorder!!!

Has anyone ever gained weight really rapidly before? I didn't eat anything bad... I'm on 0.4 mg Florinef and 3% salt IV fluid, but that is not abnormal, I've been doing that forever. The worst part- its not coming off. I've tried decreasing both fluid and salt and it just gets me to dehydration. The drug insert says to contact your MD with rapid weight gain, but I don't want to. I'm afraid of being judged. I started retaining water like crazy once and the office staff was really snorty-snotty and made comments like 'wow, check out your weight'. I'm sensitive because I feel so out of shape anyway. Any suggestions? I'm trying to exercise it off, but it drops my BP to 80/40 the day after. I really don't know where to turn on this one.

Okay, I have a very POTS memory (eg. that of a goldfish), but I had researched the same thing about 3 months ago. I have chronic runny nose now that I have POTS and never before. I found that there is a connection between your natural epinephrine receptors or producing neurons and how the body reacts to it. I'll try and remember what it is exactly. But, my question was that the research shows that runny noses are the same mechanism as POTS and if you cure one, will you cure the other. I asked my Intl Med doc and he researched it with our staff pharmacist, who researched it with his peers and a week later reported that the theory is scientifically solid (Hee hee, I'm not a clinical person), but that in order to cure POTS on that magnitude, you would have to have a higher dosage that would result in some very serious effects. Also, that the formulation that I suggested- Phenylephrine- is a global vasoconstrictor that would indeed raise blood pressure but would place the patient at risk for stroke. I did try taking Zyrtec last Monday though and I swear that I felt better. Could have been the other stuff I was playing around with that day though.

Not too long ago I faced the very same thing. To make a long story short, I headed for the car ( I was at work), when I reached it I cried my eyes silly, called my mom and took some Ativan. Then, I signed up for a counceling session. Luckily I got in immediately. The councelor was very understanding and let me talk forever about the struggles of everything ( you already know the details, by heart!) He gave me four activities and those have carried me through the really hard times: 1. Draw out on a piece of paper your problems and struggles. Relabel them "challenges" and start to connect them to "solution" bubbles. I know that this sounds really silly and dumb, but sometimes I sit and do this in meetings. After a while I come up with solutions and sometimes they are insightful changes in therapy, sometimes they are just attitiude shifts and ways to look at things. 2. Journal bad and good times. When you have a great day, journal as much of it as possible. Then you can go back on your bad days and realize that not the whole world is falling down on you. You could even start a gratitude journal, some people like those things and find sunshine in them. 3. Connect more with other people. A Swiss proverb: A joy shared is double the joy, a sorrow shared is half a sorrow. This board is great for that! 4. Plan. Plan the good stuff. I get out a notebook and plan lots of things. Outfits. A new diet plan, exercise plan. You could plan a vacation, pretend that you're feeling good for it. Rearrange your house- things that you have control of. I plan huge meals that I will probably never cook and definately never be able to keep down. Just something in the future of some sort. I'm going to start ordering tons of stuff from tourism boards around the world and plan the ultimate vacation. Anyway, I hope this helps. It all sounds silly now that I've typed it, but those four things have kept me from just calling it quits altogether and pulling the covers over my head forever more and never to emerge again (except to go to the bathroom and change the channels).!

Salt Lake City, Utah! Today, it snowed!!

I use Zofran (injectable) as an anti-emetic. I have to take it continuously to provide that benefit, but before it I had emesis episodes every day. I haven't noticed any side effects. I doesn't make me drowsy. I take 10 mg every 6 hours. Some say that 4 mg is the optimum dose. I think 24 mg is, but I'm only approved for 30mg/day. The insert says that some people have taken much larger doses without any ill effects and the leaflet reported only 1 heart block, but it was resolved. Probably the safest drug that I have seen, but everyone reacts to it differently maybe. Best of luck- that is no fun.

Thank you everyone. These are good ideas for my strategic recon on the doctor's office (I'll get into camo and everything to overtake the enemy at the front desk!!)

I use 3% AM and PM on the worst days, or just AM on the others. I have tried normal saline, but it does not work as well as 3% (approx 3,000 mg sodium). Before I had an order for this, the nausea medicines would not work at all. Combined with this they work a little better. The drawback is temporary weight gain (I've gained 10 pounds since Sunday because I'm in a hole right now). I get mine through Home Health with Zofran injected into it. Hope this helps- it has made a big difference in my life.

Oh, and I forgot-

Thank you. I feel a little more centered after getting alot of sleep and now better after reading your reply. I am always trying to be nice about this and I guess I just got to a point where all of the frustration and anger came out. I am going to do as you suggested and be more agressive. I'm also going to talk to the office managers tomorrow and say that I have not been comfortable with the way that I have been treated by the staff. There so many multi-faceted struggles with this syndrome. Each one is unique and takes some solving. Thank you for your support. I just needed a shoulder to lean on...