Lizzegrl

Casey I am soo glad you had a great experience with Dr. Grubb! It sounds like yours was on par with mine. My sister came with me and he answered all of her questions about POTS and symptoms I had been having all my life that she previously thought were overreactions or simply mental! It was so empowering to have someone validate the disease. It might be helpful if next time you take your fiance with you. It made a huge difference in my relationship with my sister to hear things from the doctor. It was also great to have someone to be able to fill in the blanks from things that I missed when Dr. Grubb was giving so much information!

Dani, have you seen a reproductive endocrinologist? My OB/GYN ran some tests, but my R.E. said that often a gyn doesn't dig deep enough in the testing. He said that a person with PCOS can have specific tested hormone levels in the normal range, but that when they do percentages of hormones and dig deeper they can be all messed up. I saw several gyns before I finally saw a reproductive endocrinologist who diagnosed and treated my PCOS.

I"m constantly bruised from bumping into doorways, tables, etc. My balance is awful. I actually always chocked it up to many ear infections as a kid! Hmm..Never know it could be yet another potsie thing.

Casey, make sure you know which office to go to! They were going to be moving back to the old office about this time - They had moved to a temp. office while the old one was renovated. I'll be down there in early May. Good luck with your appointment!! I do suggest you write down all of the questions you want to ask and take it with you so that you don't forget anything. It takes so long to get in, you want to get the answer and ask the questions while you are there. Also, expect to wait a long time. Don't go in hungry or thirsty unless they tell you to be NPO. My last appointment ran so late, my sister actually went out to get lunch and brought it back and we ate while we waited.

Mine are pretty fine. My total is 200. Can't remember the rest, but they told me they were all fine. I'm 40 and overweight too. Thank God, it is one thing I don't have to worry about. No betas for me, due to asthma. I have family with cholesterol like yours and they do a ton of fiber, lecithin, etc. to try on work on it. They are very very thin, eat well, etc. but still have the sky high cholesterol levels. The doctors have told them that they have a genetic predisposition to it. Stress also plays a huge roll in their case. Their levels go up with increased stress. I"ve found that it takes a good two weeks minimum to get used to a cardiac med. I've been on more than a few, and the stronger they are, the longer it takes to get your body used to it. beta blockers were the easiest to get used to, and when I had asthma reactions - they came on quickly. The other classes were much harder to aclimate to taking. You might give it some more time and see if the side effect lessen.

I"m certainly not the norm. I'm an overweight 5'6 female. I'm hyperadrenergic, and the body type is not uncommon according to my doc. He says we have a certain body type and look. To be fair, I've also got PCOS and have been treated with megadoses of steriods in the past few years, which makes the weight skyrocket. I've gained 30 lbs at least in the past 2 years of massive steriods.

I have similar bp issues. It jumps all over the place and that is the primary issue that Dr. Grubb is trying to control with me since it is the most dangerous, since mine is high. My heart rate actually runs over 100 most of the time resting, with my normal bp running in 140-150/100-115 range at rest. I actually have to log mine at least twice a day and take them with me so that they can work on getting my medications at the right dose. You might try doing that, so that you have something concrete to show the doc. I would bring it up with your doctor next time you see them. Btw, I also had low blood pressure most of my life!!

Fairly new here, so please bear with me if this was covered someplace else. I was diagnosed with Primary Hyperadrenergic POTS in December 08. I have also been having reoccuring issues with severe and increasingly dangerous asthma flairs. Dr. Grubb is working with me on the POTs thing. I've been on Catapress since january and it does has some implact, or it was. In Late february I had anothe rreally bad Asthma flair and was in the hospital for over a week on massive steroids. When I came home, I was on restricted movement, rest and high dose steroids for a month. Now that my dose is reducing (steroids) I'm feeling less tired adn grumpy, but my lungs aren't perfect. My doctor wants me to start on a treatment called Xolair that is an injection that boosts your bodies ability to fight off allergens. He says that he think it is the only other treatment that we can try. Steriods aren't keeping the attacks from getting worse, and they are increasing in accuity and frequency, so I am not in control. My insurance company is arguing about paying for the drug. We are in the middle of the appeal process. My big question is, are there any tests or conditions like Mast Cell disorders that could impact my treatment with xolair? I've gotten the idea from reading around here that there is a huge amount of POTS and Mast cell disorder cross diagnosis. Is this something I should talk to Dr. Grubb and Beverly about? I want to know if my breathing issues are connected to POTs somehow. Could all the massive doses of steroids be what kicked off this new episode of POTS, or ????? Does anyone have any suggestions or ideas for me?

AFter going over my medical history lliterally from birth, Dr. Grubb has said that he thinks I was born with POTS and have had episodes of it through out my life. It ws treated differently at various times to treat the symptoms, but never the underlying cause. They feel my first episode was within a week of birth! I was readmitted for multiple fever, seizure, brain swelling at one week old and was in the hospt. for over a month. I was a month early, so it wasn't that unusual back then. Now, they think it might have been my first autonomic system crisis. I have had years in which my condition was great, hardly any trouble, and then boom. back it comes with a vengance. There is no rhyme or reason to when it happens. I'm in a crisis right now, and am just resting, taking my meds as directed adn waiting for my next trip to ohio to discuss Some new meds, or mast cell testing.

I was diagnosed by a local EP/Cardiologist, who referred me to Dr. Grubb for treatment. He happened to have gone to school with Dr. Grubb and knew he was doing wonderful work in the field, so he said I was very lucky to live so close to one of the foremost experts.

I also have asthma and can't take beta blockers due to severe respiratory reactions. I was told by Dr. Grubb to just consider myself allergic to the entire class of beta blockers due to the severity of my reaction. I am currently trying Catapres patch and it has helped my blood pressure and brought my rate down a bit. I'm still a work in progress, but it has definitely helped me. Not a huge difference, but moving from severely hypertensive to just borde line is a big deal for my health. Asthma still not controlled, but hey.. work in progress.

My resting rate is generally between 90-100, sitting. If I am moving at all upright, it can go over 130. When I am actively doing something have a rate at 140 isn't unusual. I've gotten used to having a higher baseline, as it was creeping for a few years.I actually haven't been able to get a TTT in 15 years because my baseline is so high every hospital has refused to do it..lol Dr. Grubb's response was that that is diagnostic for POTS almost in itself. They are working on getting my baseline down and some days when I'm sitting it has actually gone down to 80 but they don't know if it will ever get alot lower. For me catapress has been helpful, but I'm had a bit higher than normal rate ever since my ablation for WPW nearly 10 years ago, so I may be a big different than the normal POTSer.

Dr. Grubb's office did mine and I had to lay in a dark quiet room for 1 hour, have the supine cat. level drawn, then had to walk/move for 1 hour nonstop (pacing really) and have the second level drawn. It was done to determine the type of POTS, not if it was POTS at all. Mine showed Hyperadrenergic. This helps them determine the correct course of treatment, since some of the best medications for non-hyperadrenergic POTS, can be contraindicated for those with HyperA POTS. What they are generally looking for according to Dr. Grubb, is a big difference in a resting cat. level and then the active cat. levels. Your body generally has a specific level of hormonal response in this situation, but if you are hyper adrenal, the response is exagerated and there will be a bigger difference in the supine number and the active levels. That was what I understood.

Ricky, I would seriously think about a pacer before doing it too. Get a couple of good opinions. I had an ablation for SVT years ago, which turned out well for me for nearly 10 years, but when the POTS was diagnosed, my new EP said that due to several small nonlife-threatening arythmias, a defib would be firing constantly, which is not a good thing for your physical or mental health, and that in POTS patients they have found that ablations and pacers don't often work for very long, and can in fact make things worse. So it must be very carefully weighted and researched to make sure that it is appropriate. I got a transoma cardiac monitor implanted when they couldn't find an ablatable arrythmia in my last EP study, and it was the key in diagnosing Primary Hyperadrenergic POTS, along with catacholamine levels. Whle medication is the most tedious method, it is also the one with the least risk, so give them a shot before doing something that can't be reversed. Good luck!

All4Family~ I've actually used my handicap parking tag two days in a row! It was a big victory for me, because it didn't feel so hard today. It felt like saving that little bit of energy walking across the lot, meant I could actually take the groceries into my apt. without having to take a rest before I could manage. Lesson learned from my therapist - it isn't accepting a limitation, but accepting a mechanism to open up other possibilities. Your grocery shopping experiences made me giggle, because that is soo like me! I've actually switched stores because I had to leave a full cart in line so I didn't pass out and end up having them call 911! I would rather get out fast to my car and rest, than hit the floor once more. Part of my acceptance is moving all scripts and shopping to a smaller store that I have a hope of making it through. I have to say, I'm very glad to have found this place. It means so much to know that my experiences are not unique and I'm not alone in this fight.

I am getting to the point that I've had to consider using the electric carts at the grocery, and have started using my handicap parking tag. I don't like doing it, but when I'm so sick I don't know if I"ll make it into the store for my medications, I force myself. My therapist specializes in treating people with chronic illness, so she is working with me on the acceptance issue. So for, that is the most difficult part. That, and telling people I have this condition, and it isn't going away. I don't want to be considered disabled. It is a label I've not accepted or a limitation I want to accept I guess. For me, small steps toward accepting it, have been easiest. Use the parking pass at the pharmacy, use it in the big structure when I knew I wouldn't be able to walk down 4 flights! In my home, my latest concession is placing a chair in the bathroom, so that I can sit while getting my hair and make-up done. it just makes it easier to sit down on it, and then continue. Small steps.

I have hbp, and dr. grubb and beverly both told me that "salt is not your friend". They said I should increase my fluids but not my sodium because for me, it isn't good. My pressure spikes up adn down, but tends to run high even on the catapress, so I am supposed to avoid the salt that can make the highs too high.

Sorry if I missed another thread on this one - but search didn't find what I was looking to find. I've decided that it is time to get real compression hose/garment to see if it will help me feel a bit better. When was younger, I wore Teds hose, but they are long gone and was wondering what strength is approriate for POTS, what styles are best? Is something like Spanks workable or is that just not strong enough? It isn't something that I've researched in over 15 years, so things have changes so much! Do they recommend compression for Hyperadrenergic POTS? Dr. Grubb mentioned they help for some, others no. So I thought why not try again? They did help a bit when I was a kid, so I thought I might give it a shot now. Any little bit to feel better is my goal. Is there a really good web source someone may know?

Between the POTS and Asthma my regular meds number 8-9. When I have flairs, and steroids and others are added - more. I have what is considered very good prescription coverage and my co-pays topped 500 dollars this month. I can't imagine what I would do without coverage.

That is certainly my look..lol pale as the moon

I took inderal for many years. It actually worked pretty well in conjuction with teds hose and some behavior mods. My side effects were pretty standard - no sleeping and sun sensitivity were the major issues. Except for the respiratory issues. Like most beta blockers, it does have a respiratory impact and with me, it probably did some damage after a decade of taking it. Since I had long had asthma and allergies my respiratory system was already compromised, but it is something to consider. It isn't something I regret at all, because it was really the only treatment available to me and it allowed me to finish high school and college and live a half way normal life for a long while. I just happened to be one of the more unlucky ones that it caught up with. Now, they are much more careful about use of beta blockers with asthma patients, but if your doc has weighed the risks, and thinks it is worth it, go for it!! It worked better for me than anything else has since then.

Desperate mom, I might make you feel a bit better to know that I was your daughter. It was not the teen life I would have chosen, but by the grace of God and my amazing, strong, constantly pushing mother, I got better! It took years of trial and error, with teds hose, inderal, pain meds and simple motherly harrassement, but I eventually got out of that bed. I live a fairly normal life now, dealing with POTs, etc. but I do have a life. The best things my mom did for me were things to keep my spirits alive. If it meant getting dozens of books about dream trips or videos about adventures at the library, she did it. If it meant putting up with my beloved poodle (messy boy) she did it. That dog was my constant companion when I couldn't move, or eat or sleep. He was there to comfort me and listen. When I was losing weight and nearing heart failure, my mom dragged me to one more cardiologist and said..look, I don't care what you call it, it is killing her, so if you have to simply treat the symptoms do it. Finally, someone listened and I was put on high dose inderal and teds compression stockings to be able to even stand. But it did help. Eventually, very slowly, the strength back. With strength, I could eat. They let me eat anythign I could keep down. I think I lived on english muffins and butter for a year or two. Mom made me sit up in bed when I didn't want to, she made me walk to the bathroom a few times a day, just to move. It didn't matter if I ate, I had to come to the table to get a tiny bit of mobility. All of those pushy, keep the body moving things that when we are in pain, and angry and resentful at life, we really don't want to do. Keep pushing Desperate. She needs you to be her advocate and you are doing a wonderful job.

I have some sort of autoimmune disorder, but they can't really put a name to it. I have severe allergic asthma and allergic reactions which are getting out of control. I am actually wondering if it might be a mast cell thing and will probably discuss it more with Dr. Grubb next time I see him or Beverly. When we discussed the POTS diagnosis he made reference to how I reacted with flushing, hot flashes, skin issues, rashes... I am wondering if he was talking about a mast cell disorder along with the pots.It was all so overwhelming. Is the mast cell thing considered an immune disorder? It looks like there are several of us trying to feel our way through this maze. The docs say my immune system is hypersensitive to soo much it can't handle even a little extra irritant. I have had gamma globulin, in the past which helped a great deal to get past the big hurdles. Next week, I'll be starting on Xolair to see if that will help control the reactions. My pulmonary doc says that his bag of steroid tricks in running empty and my body is not handling the reactions as well as it used to, so Xolair is the next step unless I want to get regularly intubated with the reactions. Which I do not. Here is an aside question: Dr. Grubb said I even looked like a hyperadrenergic Pots patient. He confirmed the diagnosis with tests, but it made me curious what was the "look: or visual cues that would indicate the Hyperadrenal variant.

Jump - Your doctor was echoing what Dr. Grubb said to me. She hit it right on the nose. Write off the doc that doesn't understand the difference. I am to the point that I will be able to do some very gentle exercise soon, and I know it will be hard, but I want to do everything I can to give my body a boost. I hate being out of shape. I was an athlete and gymnast off and on as a kid and having a weakened body drives me nuts! I keep getting in trouble when I exercise however because I want to go all out, and do what I used to do. That doesn't work so well, and I injure. Gentle exercise and me aren't on the best of terms. What do you do with the Wii Fit?

call your cardio and see what he wants. They might want a quick ekg, before they tell you to take any more meds, or?? It feels horrible, I'm sorry!!