Lizzegrl

Something else! My immune system is generally whacked out and doesn't really work well. This was before the POTS diagnosis.

Rene do you take an antihystamine? When I was in the hosp. they took me off of Claritin because every time I took it, my BP went way too high. My doc said he didn't like it for that reason - some people react in that manner and he switched me to zyrtec. It works just as well, no bp increase and my pvc frequency lowered. Granted, I have messed up rhythms regardless, but it is a thought. I also have to agree that bouncing around on the bbs might be part of your issue. I have been on 4 cardiac meds in the last 5 months and one thing they were really cautious about was starting and stopping them quickly, because it can make what they are trying to treat much worse for a time! I thought I was not going to be able to take the new (procardia) but after a week, it got muuch better! You have to let your body adjust and get used to them. Very hard to do, but essential!

Tea Rose I was just thinking it sound like Phlebitis! I had it once from an IV too. Always trust your instincts and certainly when your doctor tells you to go - Regardless of the rude staff. They are going to be there treating someone, it might as well be you! Just because their mood is bad, doesn't mean they go home any earlier. I always try to remember that when I'm there. Their shift isn't going to change so ignore their moods and mention it to your doctor how discounting they were when he sent a patient in to them. That is discounting his judgement too. Not good. Hope you are feeling better soon!

Julie, I had gamma globulin IVs several years ago, but it was given by a hemotologist/internist who was much more willing to do it than any other doctor I've seen recently. I had no reactions at all and I have to tell you, I felt so much better when I was getting it. It made a world of difference. It was to the point that she just looked at my blood counts and said "this is crazy, of course your body won't heal or recover from anything, it doesn't have what it needs to do it". I have very low IGGs too. If your allergist is willing, I would totally go for it. It wasn't a big deal for me at all except in the result! I stabilized and then had to leave her because of insurance and her retirement. I have basically ignored the issue since then because so much else seemed to have priority and docs have gotten very cautious when it comes to such "biological" treatments. I am currently fighting with my insurance company to get them to pay for Xolaire for my asthma which is classified as a biological so they are extremely reluctant, with half a dozen protocols, reviews, appeals, etc. My pulmonologist wants it, all my other docs do as well, but the ins. company has been stalling for months. The procrit probably wouldn't happen for months regardless, because my heart isn't stable enough for a big change. When and if they decide to do either a pacer or another ablation, I will be stable enough to think about further MCAD questions. Now, if my insurance company still refuses the Xolaire for the asthma, it might be worth trying to get into U of M to see what they say. Getting one thing stable at a time is my goal and if I can't get them to treat it as my doctors want from that direction, I might have to go at it another way. Good thoughts to discuss with the pulmonologist next week. Shots wouldn't be a problem for me. I'm an old ER worker. ;0) Funny thing is my mom was a nurse and they wouldn't even let her give her own shots of Epogen when she was taking it. I wonder if it is just in this area that they are getting really picky? Everybody is afraid of someone having a reaction I guess. They used to allow Xolaire to be self-administered, then they changed that, and got really strict on who, when and how frequently it is given, according to my pulmonologist. Liability is the watchword of the moment.

The hyperadrenal POTS was confirmed with catacholamine levels. They wouldn't make a definitive diagnosis until they had those results. Apparently, even while on meds that tend to lower your levels, mine were still sky high.

All good thoughts, thank you! I really don't have a big problem with pooling at all, so my guess is that the Procrit would be more of an aid in RBC production in my case. I have anemia and goofy blood counts most of the time and have had Gamma Globulin in the past to help.

I Saw Beverly and Dr. Grubb at the University of Toledo clinic on monday, and have started a new cardiac drug to temporarily calm down my arrthmias, then they are trying to schedule another cardiac ablation with my EP guy here in Michingan. One of the issues we discussed was my fatigue. Bev thinks when my arrythmias are finally under control, along wiht the BP and HR, I might start to feel better. If however that doens't pan out, She suggested that we might try Procrit. Has anyone taken this? Any ideas how it works on a hyperadrenal posts patient? She thinks it would help my energy level. I also discussed with her my concerns about possible MCAD that could be flaring up my asthma, and she basically said, it is a decent idea, but not what is going on with you. I happen to have the hyperadrenal POTS in which the MCAD isn't really an issue, and that I was unlucky enough to get stuck wiht two bad chronic diseases that have treatments that irritate each other. Luck of the draw. Simple as that.

I have taken atarax when I've had a crisis and it was not good for me. I was utterly sedated and zoombied out for two days. Unless I want that reaction intentionally, I'm not willing to take that chance again. It flet like I might not wake up form that stuffl! If you don't react that way, it may help you, but remember that it also is an incredibly drying antihistimine. I got sore, dry throat, and horseness when taking it. I also only took half the prescribed dose. good luck!!

Bella Thank you!! You are so sweet! Below is the best description of an ablation procedure I could find. It basically is a procedure to kill off the firing points in your heart that are causing arrhythmias. I had one many years ago before they got more advanced and then I had a EP study, last year - that is basically when they do everything up to the point of doing the actual ablation. They test your heart with electrical impulses to try to induce the arrhythmias so they can locate the bad firing points. That is the study part - if they can't find the actual firing points or know they are in places that are not ablatable, it will stop there, or they may want to do the ablation later after they compile all of your results. When the do the ablation, they will actually burn out the firing points that are misconducting. It is just like a zap feeling.Noting worse than you have already felt, that is for sure!! In some people, they may have to install a pacer too. My Transoma monitor is in the same place and the same size as a pacer and it wasn't bad at all. The worst part was simply when they were stretching the incision to sort of squeeze it into the pocket under the tissue. Not painful just stretchy and strange. They wanted the scar to be as small as possible. It was really simple after everything else, and the pain afterword was no worse than the actual cath site, for me. FYI, my cath sites are a bit worse than most because of the small vein issue and multiple attempts. ;o) http://my.clevelandclinic.org/heart/servic...s/ablation.aspx

This thread is kind of prescient - Today my EP's office called to tell me that my Transoma device has been sending in some weird tracings and well, I might have to get another ablation (via cath.) Fuuuun. It has been a year this month since the last one. I'm all up for it however, if they can get rid of the crazy heart stuff. I really don't want to end up dead from it like the rest of the familia. Such a lovely thought.

OHh Good Fire! I"m so glad. Lucky you have good skin.. LOL I lost my skin when I wore the darn patches, so sleeping with it was umm... difficult ;O)

Mighty Mouse! Me too. It was soo freaky to feel the cath moving through my veins. they actually had to back it up and try another route on me because my veins are so small. At one point I nearly came off the table when they "took a wrong turn", it hurt so bad. I ended up getting a bit of something at that point that took the edge off, but I was wide awake through the whole thing, answering questions. I was very very glad that back in the old days for the first one I was knocked out totally!

Uggghhh I would also love some confirmation because this is certainly true for me. I get sick constantly, get it much worse than most and I HATE it. I find myself avoiding large group of people, because I'm scared to death of catching something, because I generally do!

I've been working since I was 14 with periods of time off for asthma in the past 6 years. This past year, things have gone downhill. I was diagnosed in Dec'08 after being off work for the first 5 months of '08. My asthma has also flaired like crazy this past year, and I worry about if there is a connection. This year, I've been off for almost 8 weeks of the year. I'm scared to death of what might happen if I can't work at some point. I'm 40 and single, with not a lot of family support. My sister is frankly terrified that I'll become dependent on her if I can't work in the future. We were raised in a family in which working is the defining factor in life. Pretty much, unless you are actively dying, you work. My mother worked full-time, went to college full-time, taking only two weeks off for radical double mastectomies, then went into full chemo, doing school and work. It is pretty hard to cope with this kind of an illness when the possible ultimate outcome is foreign to everything you were taught to value.

Hi Renee, I had pretty severe general muscle pain, my chest muscles were sore, my legs, my back and I had an awful headache for a few days after the last one. Quit researching right now. It just upsets you more to read of all the possible side effects. Prednisone causes pretty lousy anxiety when you are coming off of it, so you don't need to worry yourself anymore than the drugs are already doing. That would be my advice. You have to remember that when they write up the risks of procedures, they have to document every single case that has ever happened! It could be that it only happened to a few people or in very specific circumstances, but they still document it. Thousands of people a year have caths and a relatively small portion have any complication at all. I am 40 and live alone also so I know how the fear can overtake you sometimes. Rest and try to relax. All those drugs have to get out of your system and you need to let it recover. I've learned to take all of those helpful things that say "Oh you will be normal in 18 hours" with a grain of salt. They are optomistic to a ridiculous degree. I didn't feel better for a week or so and I'm a good bit younger than you, so don't panic if you aren't jumping around in 4 days. ;0) Even my nephew who is 2 and full of energy and vigor, had surgery recently, they said he would be normal in 8 hours. HAaa It took a good 2-3 days before he was even close to being himself again. Liz

How are you doing with the 30 day? My doc tried a 7 day which I had also had years ago, and I reacted so badly to the electrode patches that he wouldn't do a 30 day and after my EP study, he put in a Transoma loop recorder. Hope you TTT goes well and you get a diagnosis. As an aside, I've experiences both types of doctors, and in the end, the rude, nasty doc with some knowledge can at least be used to gain good information to take to a doctor that has both the bedside manner and the expertise. Accept what little he can offer, get the tests, and then gather your results and find another doc to see. Do you know that the University of Toledo Medical school has an Autonomic Disorders Clinic? It takes quite a while to get in, but I've loved it.

Hi Rene, yes I had massive body aches and soreness. I'm sorry your doctor didn't tell you about this stuff! When you are forced to lay for a long period of time, while you are anxious and worried, all of your muscles tense up, and frankly, the carts and beds in the cath lab aren't meant for comfort. I had no side effects that I was unaware of, but my mom was an ER nurse and I worked in a hospital for 10 years, so I might have been more aware of what would occur?? Well, actually the first cath was in the late 90s for an ablation and I guess it was a bit complex. I actually was on the table for 7 hours under a general due to the complexity. I was poked twice in each side because my veins are so bad they kept having trouble getting the cath to thread. Soreness was an understatement. The last time was last year and it wasn't as bad at all. Do you have an electrophysiologist? (Not sure if I got the spelling right) That might be helpful if your problems aren't related to a block. An EP cardiologist was the first one to suspect POTS and paid attention to my complaints about arythmias, and referred me to my POTS specialist, after clearing me for other issues. He was much more attentive to issues related to heart pounding, skipping, etc. Hope you are resting and feeling better soon! Liz p.s. forgive the spelling. I wish boards had spell check.

Steroid side effect is often that sunburned face feeling, anxiety increase, sleeplessness and exhaustion for me. I've been on them a million times at very very high doses and these happen every time even at the levels you got. I've also had a couple of caths, and frankly, I felt like I'd been hit by a mack truck afterward both times. If you are worried about the steriods, call a pharmacy and ask them about side effects that are common. Rest and let your body heal from being traumatized. In a few days, you will feel better I bet.

Ram, I was treated for cardiac arrythmias and severe cardiac symptoms since puberty. It wasn't until I was very very ill and an open-minded cardiologist in the early 80s believed that it wasn't caused by panic attacks. I was experiencing such severe blood pressure drops along with such high pulse rates that he started treating symptoms so that I didn't actually die. My echos were so bad that he was afraid I might not come around one day when I fainted, or my heart would actually give out! I also have a strong documented family history of cardiac arythmias, syncopes, and symptoms that could well be POTS. Unfortunately, the other family members have all died, so they can't really do serious testing to prove it, but pretty much every doc I've seen feels that there is a genetic root cause issue that could be traced through the past 3 generations if they were alive. One of the things that they discussed when diagnosing me was that my issues began very young. They also did a very complete H&P including discussing my health history as a child from birth onward, with my mom. I was actually very ill from birth. ICU at 2 weeks. One thing I have noted is that my heart rate seems to be much higher at all times than even others with POTS. I run over 100 at almost every moment. If I have a resting rate (laying) below 100 it is almost shocking. The cardiac issues have been the one area that has been the worst in my case. I've been cardioverted from WPW, in the past. I was ablated for it and have had some arrythmia issues since, but nothing ablatable. One note: as I've aged, my blood pressure has migrated toward being high rather than bouncing up and down. It could have been exacerbated by other health issues like severe asthma which has gotten far worse with age, and the increasing need for high dose steroids for extended periods of time, but they have factored that in and don't feel it is the root cause.

Good information Ram. My case is indeed unique. I actually have had POTS symptoms for as long as I can really remember. It got worse when puberty hit, but it has been a life-long challenge. I've had syncope with loc, severe tachycardia, various arrythmias, blood pressure inconsistency, severe fatigue, exercise intolerance, etc. for years.

Mine is genetic too. Born with it. The ups and downs can be influences by things like viruses, but overall, mine was caused by simple genetic miscode. See below a quote from the Vanderbuilt U. Dysautonomia web site: http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4788 "Our understanding of orthostatic intolerance was greatly expanded in 2000 when norepinephrine transporter (NET) deficiency was reported. In a proband with significant orthostatic symptoms and tachycardia, we found disproportionately elevated plasma norepinephrine with standing, impaired systemic and local clearance of infused tritiated norepinephrine, impaired tyramine responsiveness, and a dissociation between stimulated plasma NE and DHPG (an intraneuronal metabolite of NE) elevation. Studies of NET gene structure in the proband revealed a coding mutation which converts a highly conserved transmembrane domain Ala residue to Pro. Analysis of the protein produced by the mutant cDNA in transfected cells demonstrated greater than 98% reduction in activity relative to normal. Studies of the proband and her family revealed correlations of plasma NE, DHPG/NE, and heart rate with the mutant allele. These results represent the first identification of a specific genetic defect in OI and the first disease linked to a coding alteration in a Na+/Cl- dependent neurotransmitter transporter. Identification of this mechanism may facilitate our understanding of genetic causes of OI and lead to the development of more effective therapeutic modalities." This might give you a good idea what the NET variant of POTS is all about: http://content.nejm.org/cgi/content/abstra...ournalcode=nejm

Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes. 2. Have you ever been diagnosed with EDS or suspect that you may have it? No to both 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Occasionally 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Yes. Diagnosed 5. Have you ever been informed by a doctor that you have low blood volume? No 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Yes yes yes! 8. Did your POTS arrive suddenly? No. I have been aware of the symptoms since I was 9 years old. before that, not really sure, but I have been told I was born with it - genetic. Other family also probably had it. 9. Is your skin pale? Extremely pale. I've been told I look like bottle of milk. 10. Please the top 6 worst symptoms that you experience with POTS: Tachycardia and arrythmias Insomnia Fatigue Overheating Dizziness/Fainting Inability to exercise for any reasonable period of time

This happens to me all the time! When it is really bad, I can't even use a hairdryer without my arms getting tingly from the shoulders down. Dr. Grubb told me it was improper bloodflow to the extremities caused by the POTS. My knuckles often get a dark, blackish look too which he said was from circulation issues as well.

I have alway been sun intolerant. It has been a lifelong issue, long before my HPOTS diagnosis. When I was younger they called it sunstroke. I burn, get incredibly sweaty and hot, pass out, etc. my doc said that was fairly typical of my diagnosis. I stayed in Miami during the summer for several years, and it was darn near impossible to go outside without getting really sick. Air conditioning is crucial! Shade and hats and keeping hydrated are essential too.

EM, it is funny you should mention the ear thing because yesterday at noon, I had my first storm since being on medication (4 months) and I am sitting here whiped out, with a migraine, and pluggy feeling ears. I had no idea the ear thing could be from the surge. When I have them the best treatment for me is resting a lot. I have to lay down in a dark quiet room and try to sleep. I drink as much as the nausea allows, and try to force myself to eat a bit to keep my blood sugar up. It also helps when I have someone around that just checks on me every few hours, so that if I need something I don't have to get up too much or move around too much, as this makes it last longer, I have found. It really helps as other have said, to just remember 'this too shall pass". I don't know my trigger either, so that is more frustrating, but if you keep remembering it won't last forever, and the confusion and anxiety are part of the surge, it isn't so bad. Don't let the actual surge feed on itself. Does anyone else get the slurred speech and bad confusion? My doc told me it was part of it, but that is the one thing that is hardest to accept. Thank God it has only happened in public once and wasn't too bad, but I am afraid that if it does, people will think I'm a big drunk. Earth Mother, I feel for you and hope things are slowing down a bit. Rest rest rest is the only big thing that helps me get through, and not trying to do too much too soon after it happens, because I tend to relapse when I do. Good Luck chica.