violahen

I was born with POTS. I have been symptomatic ever since I can remember...fainting, etc. I was diagnosed with a "cardiac condition" at age 20. (My parents refused to believe I had something wrong with me previously...I just needed to "get control" over myself they siad... I was offically diagnosed with POTS at age 36! It's been a long haul. I am 40 now. Kristen

Hi: I'm back on the forum after a long break. I have had POTS all my life, and I have had vertical splits in my thumbs especially ever since I can remember. I have been told that it is POTS/cardiac related. Mine start at the cutical and go all the way up to the end of my nail. Kristen

Hi: I have been a member for a long time, but have not visited the forum for a long time. Greetings everyone! I was born with POTS and continue to struggle with it. I am now 40. I seem to have entered peri-menopause as well, which is really making things challenging. In any case, I have been on Provigil for several years. It helps me quite a bit along with several other drugs. Due to an insurance issue, I can no longer get it covered. It is quite expensive. Between $300 and $400 for 30 pills. I have looked into the generic form which is legal in Australia. Itan be purchased online from Canada. ($199 for 100 pills!) Does anyone use this version? It is produced by Sun Pharmaceuticals. Thanks. Kristen

Hi: I know exactly what you are referring to. You describe it really well. I know just what you mean. I get the same way...the severity of it varies day to day, but at it's worst, I can't get out of bed. I take Provigil (among other things), and I do think it helps. It was WAY worse before I was on Provigil. Good luck! You are NOT alone. Violahen

Hi Everyone: I have an appt. with Dr. Grubb this thursday. I can't wait to see him! I am hoping he is doing ok. I heard from Ken Davis recently that he is actually doing much better and really trying to take care of himself...thank goodness. I'll let you all know how it goes, and I will of course send everyone's best. Kristen

If you are looking for testing, I would suggest Dr. Fouad at the Cleveland Clinic. I just saw her recently and she wanted to do tons of testing on me. They have state-of-the-art facilities. Unlike you, I don't want testing....been through it all before...Dr. Grubb is now my doc. He is FANTASTIC. Good luck! Kristen

Hi Linda: I was not told specifically that the epidural would lower my bp even more. I did have some dips in bp, but they seemed to be more associated with big contractions. As far as my docs were concerned, they didn't want my body to to have to try to respond to extreme pain because that can make the POTS symptoms much worse. It worked for me. Also, they carefully monitored how much epidural they gave me as to cut the pain but not completely remove all feeling. I really recommend that she experiment with posture (sitting, lying down, etc, while in labor...it really helped me when trying to get my bp to stabilize.) Also, I don't know if I mentioned, but I did not do any pushing....again because any type of straining can trigger symptoms....(some people with POTS even faint when they strain to have a bowel movement.) they allowed the baby to travel down himself until he was far enough down the birth canal to be pulled out. With my first child she used forceps to pull him out...it wasn't necessary for my second. Good luck! She can do it! I really do recommend the epidural though....sudden extremes of anything....pain...even emotion can trigger symptoms. Kristen

Hi: Thanks for all the info! By the way, I take cerefolin AND provigil (as well as lexapro and Magox 400)...this combo seems to be the best bet for me at the moment. Although, I would like to try procrit. Kristen

Hi: I have been taking cerefolin since last May. I also take one tab a day. I don't have any side effects. I can't say that I notice as dramatic improvement as your husband, but I don't think it hurts! I think it may help somewhat. I too had trouble getting it refilled through Rite-Aid. I now get it through Costco...It is not very expensive there...about $35 for a month's supply. (Not that $35 is cheap per se, but it is a LOT cheaper than my provigil med!) I would recommend it to anyone who is trying to alleviate brain fog. Kristen

My thoughts and prayers are with you. I am so sorry for your pain and loss. Kristen

Hi: Welcome...I'm so sorry to hear about your situation. We can all relate on many levels. Don't give up! I am very biased about docs, but I would HIGHLY recommend you go see Dr. Grubb in Toledo. He is wonderful. He is so knowledgeable about our illness and can offer many different med options. I imagine you might be an excellent candidate for procrit considering the severity of your situation. Dr. Grubb has had excellent results with this drug, and some others as well.... Also, Dr. Grubb is so helpful in terms of dealing with the psychological effects of this nasty illness. He is a huge support. He is probably the most compassionate and understanding person I have ever met. Take one day at a time. Allow yourself to grieve your losses...be gentle on your mind and body. Rest. And DON"T GIVE UP! Stay in touch with us! We are all here for each other! Kristen

Hi Again: I wanted to add that I would stick with it unless she really is convinced it is making her sicker. You may want to up the dose with your doc's approval. Dr. Grubb is my doc and he told me that my dosage is not a high one. Is Chrissy very small? If so maybe a higher dosage would be too much. I am an average size woman. I am also VERY SENSITIVE in general to meds, but this one seems ok for me. By the way, is she staying hydrated? That's a huge factor for me. Also, she may want to go in and get pumped up with IV fluids before a trip. It helps me...especially before flying, since flying dehydrates even "normal" people. Good luck! Kristen

Hi: It did take a while for me to notice a significant difference while taking provigil. I was convinced that it was not helping and then suddenly I felt a change. I have been taking it now for almost a year, and it does make a huge difference for me. I experimented a lot with dosage for a while...less...more....what has been most beneficial for me is 150 mg....quite a bit more than the dosage you mentioned.... When I experiemented (with my doctor's help of course) with dosage I was making changes of 50mg at a time up or down. By the way, it was at least a couple of months before I really noticed it was helping. I don't know if the doc mentioned this to you, but provigil stays in the body about 6-8 hours....I take mine in the AM when I wake up....by the evening I can definitely feel it wearing off. Luckily, it does not affect my sleep. Good luck! Kristen

Hi: When I first met Dr. Grubb I had sent him my records ahead of time. I would recommend doing that....I'm sure he would appreciate it so he can have a sense of your situation before you arrive. Just a warning...they are usually swamped at MCO and the people on the phone are not always the nicest. I would just call them and tell them that you WILL be sending them ahead of time via mail. I would then call a week or so later to be sure they arrived. Good luck! Kristen

Hi: I see Ken David (PhD) in Toledo....he is wonderful. His contact info is: 5577 Airport Hwy Toledo, OH 43615 419-866-1212 or 1-800-414-6402 Good luck! Kristen

Hi: Yes, Dr. Grubb can get backed up...although I am told that they are trying to keep his schedule light these days due to his own health issues he's been dealing witih. Also, he has a nurse practitioner helping out now which should help his load. One other thing....if this is your first appt., you can expect that he will spend A LOT of time with you....the first time I met him I had a 3 PM appt....I went right in at 3 and he talked to me until 8 PM that night! He is incredible. I too have stayed at the Hilton next door....they have a patient's rate which was very reasonable. Good luck! I'm excited for you! Kristen

Hi: I've had POTS all my life....and I have delivered two healthy boys....both pregnancies were difficult and considered "high-risk". My bp was very low and I fainted a lot. I did go in for regular IV infusions because I was constatntly dehydrating....it did help and was very necessary....w/ my second child I actually went into premature labor due to dehydration, so I can't stress enough that hydration is very important. (They were able to stop the early labor luckily!) As far as my deliveries went....I had scheduled inductions both times....the idea was tthat it would be easier to coordinate all my docs schedules so they could be on hand if need be. (Actually for my second, I went into labor naturally on the day I was to be induced). I too was told that c-section was not desirable and could make things worse....however, I did have epidurals both times....with no problem....she should definitely consider one....especially because pain can trigger the autonomic nervous system to go haywire. she should be as "comfortable" as possible. I too was bedridden for periods of time....I would encourage any kind of movement, as staying completely immobile can make things worse too...keeping the bp very low. How about massage at least? Good luck! Kristen

Hi: Wow, it sounds like you are overwhelmed with so many things! All I can tell you is YES, YES, YES go see Dr. Grubb. He is WONDERFUL. It is DEFINITELY worth the trip....also, with your blood volume issues....if I were you I would go in for IV fluids right before flying....IV fluids tend to help me when I am in a bad place....they seem to trick the body into thinking that the volume is pumped up...even if it isn't BLOOD volume per se. I am sorry that you were scared by the comments about Procrit....I am not currently on Procrit because of the expense, but as Dr. Grubb will tell you....he has had great success.....he says he would giv e it to all of his patients if it were not so expensive. He has told me that he has had 80% success....and 15 out of the other 20% were allergic to the med and could not take it for that reason...I am still hoping to get it cleared by my insurance. Dr. Grubb will also tell you that you WILL need to be monitored while on procrit to be sure that you are getting the right amount, etc....since it does increase your red blood count, they need to be sure that your range falls in the right place while on it. Good luck! I hope you go to meet Dr. Grubb....he is an incredible doc and an incredible person....he is so knowlaedgeable, but also so understanding and compassionate. He has truly changed my life. Kristen

I can completely relate to your situation brneyedchica. Back when I was in my mid-twenties I met a guy who I thought was the most wonderful man alive. At the time, I too was very sick...the week I met him was the first time I had been out of the hospital in two months....he was not phased by it and very loving and supportive...at first.....then eventually he started to express that he couldn't handle the "health issue"...eventually we broke up....we are both professional musicians and we come across each other once in a while still....seeing him many years later has enabled me to see that it really had very little to do with me...this guy is still searching and confused about what he wants in life. I DID eventually find the right man....now my husband....we have been married for ten years....the weird thing is how we met....we met at his best friend's FUNERAL...his best friend (and my good friend) died of an undetected heart abnormality at age 26....he died in his sleep suddenly. So Craig and I met under very emotional, health-related circumstances....it was very bizarre. But it didn't scare him away....he was in it for the long haul.... Ironically, however, as my health has deteriorated in the past year or so, Craig has become one of those "bury the head in the sand" type people...he is in denial...it's a survival mechanism....I totally understand it...I always say, "I wouldn't want to be married to me! It's difficult and scary!" It's been tough because when he shuts down, and don't feel the support and don't feel like I can express how I feel. We have now begun seeing a therapist who specializes in helping people with chronic illness....it is really helping....it's still difficult for Craig, but he is trying and so am I... Also, my doctor, Dr. Grubb, is incredible about talking to me (and him) about this stuff. He has told me that the divorce rate for chronically ill people is about 90%!!!! Well that shocked and scared both of us.... It's true that people with chronic illness have ebbs and flows in life... one day at a time....patience, and understanding.... Good luck! Yes, DON'T SETTLE! There are good ones out there. Kristen

Hi: I am a professional musician and I spend every summer at a music festival at the Grand Tetons in Wyoming. I do tend to have altitude issues....not to mention BIG dehydration issues while I am there....I have had to go to the ER for IV fluids on occasion. The best advice I can give is DRINK CONSTANTLY....and be sure it's a sports drink and not just water....drinking tons of plain water can dilute your body's electrolytes and really throw you off. Be sure NEVER to be without gatorade or something similar. I have found that when I drive instead of fly, I do MUCH better....Dr. Grubb agrees that a grudual increase in elevation is easier on the POTS body. I always try to take it as easy as possible while I am there...no hiking really...I just can't handle it...but I do get around and have a great time.... Good luck! Kristen

I take a megadose of magnesium (Magox 400) every morning as prescribed by Dr. Grubb....it definitely helps my migraines....I still get them, but they are less frequent and MUCH less severe. Kristen

I got mine online at MedicAlert. It says "Postural Orthostatic Tachycardia Syndrome - call immediately" The call immediately part instructs them to call Medic Alert and then they give the detailed info on file about meds, my doc, etc. Theoretically they are NOT to act until they have spoken with Medic Alert...Medic Alert keeps a pretty detailed file on each person. Good luck! Kristen

Hi: I take provigil and it is very helpful to me....I have been on it for about a year.... I truly would not be able to function without it. I have big tendencies to have VERY low bp and pulse....it definitely "pumps me up" and gets my heart moving when it won't do it on it's own. By the way, Dr. Grubb is my doc too...he prescribed it. Good luck! Kristen

Hi; The Hydralyte sweetener is glucose (the can says glucose derived from corn). The complete list of ingredients is: glucose, citric acid, potassium chloride, sodium bicarbonate, dipotassium phosphate, ascorbic acid (vitamin c), sodium chloride, fructose, magnesium gluconate, calcium gluconate, maltodextrin, natural fruit flavor, beta carotene, and red grapeseed natural colors. The can also says: Hydralyte contains these ingedients to make the solution isotonic for rapid absorption directly from your stomach into circulation, supply vital electrolytes for cell functions, buffer the drink so it won't upset your stomach, be an antioxidant and facilitate the use of energy in the cells, and make the drink more palatable so you'll drink before you need it. It was developed by a biochemist/athlete/runner. The website is : www.Gookinaid.com (It used to be called Gookinaid) Kristen

Hydralyte has been the solution for me....I can't take the sugar in Gatorade either. Hydralyte is a wonderful solution for me....I found it online at sportsdrinks.com. I have seen it in healthfood-type stores as well. I HIGHLY recommend it. It is actually specially designed for people like us who need fast electrolyte infusions. It comes in a powdered form that you add water to....so you control the strength as well. It's great and NOT full of sugar. It really, really helps me. And yes, Propel does not have electrolytes....just vitamins...too bad because I LIKE Propel! Good luck! Kristen