delphicdragon

Well, I saw the doctor today to get the results of the tilt table test I had last week. The news is not good. It's POTS. I knew that and have known that for the last 2 years. I did manage to make 10 mins at a 60 degree tilt (they tried the 80 degree, but my heart rate shot up to 150 immediately and so they put me down and gave me oxygen before they tried to tilt me again.) However, he said that that type of POTS I have (this was not elaborated on, and I'll find out when I get the official results sent to my house) no medication will help me. He said that my heart is filling with too much blood and therefore Florinef and Midodrine will make me worse. I can't take Beta-Blockers because I have severe asthma. I'm not sure if the heart thing is due to my Ehlers-Danlos or not, and if it is due to the Ehlers-Danlos, I need to see a cardiologist ASAP. I'm just trying to sort it all out. I'm too symptomatic right now to work and running the risk of losing my health insurance. What does one do? I've always been very independent and am now living at home, doing school through telecommunications. What happens when you can't work and the health insurance runs out? I can't afford an ER visit or weekly IV salines. Help! I'm feeling really, really overwhelmed. I want to go into work the one day a week I feel better, but how do you explain the "yes, I look normal, but I'm actually really sick?" and "no, I can't work everyday, today was just one of the few good ones." Thanks for letting me vent. Sara

Let's see if I remember. It was a while ago ( get to have another one on Thursday) Laying Down : 115/60, pulse 115 Tilted (1 min) : 158/130, pulse 168 Tilted (5 min) : 90/??, pulse 130 I was given a diagnosis of high blood pressure and told to take high blood pressure meds as well as salt load!!!! Took the results to an endocrinologist and was diagnosed with POTS. Best of luck to you. Sara

Hi Everyone in the Northeast- I saw Dr. Nahm last week Wednesday and it was all in all a good appointment. He seemed very understanding and hopeful, but I'm not sure how informed he is on the condition. He knows plenty about POTS, but is convinced that it is only caused by a virus and will go away with time. Now, I sure as heck hope that mine will go away with time, but when I mentioned the Ehlers-Danlos as a contributing factor, he said that he wasn't aware of connective tissue disorders causing POTS. (I plan to bring research articles when I see him next) I'm sorta bothered that he doesn't see a connection between my joint disorder and the condition. When I couldn't remember having a virus he said that I must have had a mild case of mono! Now, I've been tested for mono throughout college and the tests have always been negative, so I'm not sure what's going on with that. He did have an interesting solution, and suggested I take Sudafed, a stimulant, which is supposed to trick my heart into thinking there is enough adrenaline and will cause it to beat slower. Now, it doesn't exactly help the heart rate, but it does give me some energy and seems to sorta calm the POTS down a bit. Maybe that's placebo, but I do like it, and so far (knock on wood) there are minimal side-effects. Has anyone ever tried Sudafed or Ritalin as possible treatments for POTS? Sara

I don't wear my bracelet anymore as I have gotten thinner and it falls off. :-/ I do have MedicAlert though, and it lists Asthma, Hypermobility Syndrome, Ehlers-Danlos Syndrome, Orthostatic Hypotension (closest I can get to POTS) and corneal abrasions. I've actually found that when I wore the bracelet, Drs never looked at it. Most just asked me what I had, and when I listed my conditions gave me a piece of paper and told me to write it out for them. One thing I do have that is useful is a sticker that is applied to my car rear window that has the asclepius (the twisted snakes/ medical symbol) on it. This way if I'm ever in a severe car accident, the paramedics know that I have mutliple medical problems. I would say that it is useful, and if you can afford it, I would get it. Sara

Hello I finally got an appointment to see an autonomic specialist in Greenwich, CT, a Dr. Frederick Nahm (mods if we can't say names, please delete this post) Has anyone ever seen him? Does he "get us"? I have been diagnosed with POTS and when it got worse about two weeks ago, I finally got my PCP to get me a referral to a specialist. I'm currently not working, am not allowed to drive and still quite sick. (Work is letting me telecommute until further notice, as my PCP wrote me a Dr's note.) Thanks Sara

Mary- When I had my tilt table, I didn't pass out either. The cardiologist who did it first said that I'm just out of shape, that's why my blood pressure dropped out!! I hope you find a sympathetic doctor. They are out there, but are few and far between. I've got new doctors now who finally get it. It took about 2 years, but keep looking. With this condition you need a good team behind you. Best of luck! Sara

Hi Everyone- It's been a while since I've posted here. I was doing quite well I thought. I started my PhD program and had a wonderful 6 months, then yesterday all heck broke loose. I wasn't feeling well, kinda shaky, and I took my bp, it was 98/83, with a pulse of 142. I called my cardiologist and was told that I needed to go to the ER, which I didn't want to do, but she called the ER and since I work at a hospital I needed to go. Well, the ER wasn't too happy with me. They said I had high blood pressure (130/72) and a high heart rate (160) and I was immediately given a bed. Apparently when I stood up, my heart rate would drop out and then climb. Well after 2 liters of saline, my heart rate was still at 115 laying down. I was told I have low potassium and a high D-Dimer level and the doctor came in and told me that I probably had a pulmonary embolism (!!!!!). Well the CT scan for that was normal, but I still have the fast heart rate even after the liters of saline and then a potassium infusion (I couldn't stomach the oral potassium) Now, I've been called a "healthy enigma" and no one knows what to do for me. I'm going to start getting weekly IVs to try to keep the heart-rate down. Blood pressure and heart rate are still high. Thanks for letting me vent. Any suggestions? Has anyone ever had a high D-Dimer or low potassium before? Sara

Do you eat right before you go to bed? Many times for me I get this type of reaction after I eat. If I don't get warm, then various unpleasant gastrointestinal symptoms start. I'm wondering if it's a similar mechanism, where blood flow is being rerouted, in your case back to your extremities, in my case to my abdomen to digest food. Just a thought. I'd mention it to the neurologist, hopefully he/she will be able to help you. Sara

I'm not on any medication for it specifically. I can't take many medications and I don't want to mess with my system any more than I need to. What I've found helps is an herbal supplement called Rescue Remedy. Five drops on my tongue is usually enough to stop these events so long as it is doesn't go on too long before I take it. The supplement does contain alcohol, so I don't know if that would be contraindicated with proamitine. Good luck finding something that works. Sara

Generally testing the catecholamines during an attack is a good way to get a diagnosis. However, I was determined to have hyperadrenergic pots because my blood pressure spiked during the Tilt and then dropped out. (So I went from 115/75 to 158/90 to 90/ (um I can't get a dystolic!)) Because of that massive spike followed by a 70 point drop, I was told that it was hyperadrenergic pots. If that's what happened during your tilt, I'd say it's probably hyperadrenergic pots (but I'm not a doctor) Sara

Amy- That definately sounds like me!! I used to tell my mom I was "stressed" all the time and she would ask me why I was stressed. I rarely had an answer. I'm learning to just say, this is not a panic attack, it's just an adrenaline rush to keep the adrenaline rushes from turning into panic attacks. (Granted, it's the same physiology, but now I'm not stressing out about why I'm nervous.) Sara

Glad you're feeling better. I think you might be onto something when you say that these episodes are maybe part of POTS. I get adrenaline rushes that really upset my stomach (severe nausea and diarrhea). Your POTS seems quite bad from the other posts I've read, so that may just be a "nerves" reaction. It also might be that our immune systems aren't as good as they should be and can't fight off stuff. I always thought stomach bugs were really infectious, so maybe if someone else around you is sick or gets sick then maybe that will give you the answer. Stay well!! Sara

I have had a reaction to Gadolinium. It was quite mild - just like an adrenaline surge - so for me that's nausea (awful in a tube), pounding heartbeat and a shaky feeling. Usually the adrenaline surge leads to stomach upset, but with the Gadolinium it didn't - which was good for me. All in all, it's quite safe and though I can't have it again (I'm sensitized to it) I would still recommend you get the injection. The most common side- effect - if there is one - is a mild headache. Sara

Tessa- I think that Flop has given you a plethora of information. Thanks! I too, have low aldosterone levels. They've crept up in recent years as I'm learning how to manage the disease but for a while mine were 2, with a normal range of 5-50. I know the tests all have different ranges and I don't know exactly what was tested, but now they are 9, which I've been told is much better. Also, aldosterone levels are lowest when laying down and highest when standing, so if the test was taken lying down that may be why the level is low. I know for my aldosterone tests they had me stand for two hours before they drew blood. Standing was the worst part of that test - the nurse didn't want me walking around or leaning on anything as it might change the levels. Also, as Flop said, keep an eye on the Potassium levels. My grandma was on high blood pressure medications that drained her potassium levels and she had a severe heart arrhythmia as a result. I hope you feel better. Sara

Maxine- If you can, try sitting outside in the sun. The skin makes Vitamin D naturally and this might help your levels increase. They can also do Vitamin D injections (have to buy it in Canada and have it shipped to the States) Perhaps it isn't the Vit D that makes you feel bad but the other ingredients in the pill. I used to take a calcium supplement when I was little that always gave me a stomach ache. The doctors refused to believe that the benign vitamin made me sick, well fast forward a few years and I find out I'm allergic to malt, which was the second ingredient in the calcium tablets. Usually, it's the filler that gives you problems. I'm taking a natural Vitamin D right now, has to be D3- and sitting out in the sun. Good luck. Sara

Radha- I get this too, especially if I eat a large amount of food. Snacking helps me a lot. I wish I had an answer for you (and for everyone else who has this) so we wouldn't have to suffer with it. I'm not sure if my problem is from my stomach emptying too slowly or too quickly, but it is quite uncomfortable. Had a heart rate of over 140 just from lunch today. I find sometimes that sipping cool water and laying down can somewhat short circuit the reaction. Sara

Hi Everyone- I wanted to make a note that if you are having bone pain or just in general joint pain, try getting your vitamin D levels tested. I did and mine were wicked low (13, normal is 25+). I'm taking a Vit D supplement and it made a lot of the bone pain go away. I think we're at risk for osteomalacia (the technical name for it) because we're inside a lot as going out is quite difficult for many here. Vitamin D is relatively benign and might help with some of the pain. Sara

I definitely agree that you need to be careful with your knees. Best type of exercise I've found is swimming, especially if the pool is warmish, my joints wind up being less painful. If you have a joint that "pops" I'd wear a brace when exercising. When I used to ski (which I shouldn't have ever done, period...) I have my left knee in a simple brace and the right in two braces as the ACL in that leg is so overstretched that my knee can dislocate in any direction. Also, I wouldn't push it - if something hurts stop and wait for it to heal. I pushed my hip too far and now I have to get steroid shots until they stop working and then it's surgery to stabilize the hip. Also, I've been taught how to properly relocate certain joints by my orthopedist. Sometimes relocating a joint incorrectly can cause severe pain/damage. I've pinched a nerve in between two bones and that is not pleasant. Bracing, as has been said here, is key, as is low impact exercise. The less pressure on the joints the better. Biking on flat terrain, walking, swimming, yoga are all probably good. Exercising had never been pleasant for me, but I'm finding that long walks help more than they hurt (my uncle's swimming pool is getting a new liner - so no swimming until July 15th ) Sara

Hi Jaquirouin- I have both Asthma and POTS (and EDS III). I take Maxair and Xopenex for occasional flares (usually when I'm sick). According to my pulmonologist I've probably had asthma for years but I didn't have my first asthma attack until my freshman year of college. Apparently my lung volume can drop by half and I don't even notice . Are you going to be having a methocholine challenge test? This is how I was diagnosed with Asthma. They give you inhaled medicine that only constricts you if you are asthmatic. I find that albuterol makes me way too tachycardic to be functional, but the xopenex, which is a slightly different shaped form of albuterol, opens my airways without causing my heart to go spastic. I know that I can't speak for everyone here, but personally I find the asthma to be easier to manage than the POTS. Sara

Hi Everyone- I'm wondering if anyone has any advice related to medications. I'm really getting desperate to take something that will allow me to function. I'm sleeping 12ish hours a night and still exhausted. I need to be functional by August when I start my PhD. I've tried Florinef and after 4 days I swell up so much that my doctors have told me I can't take it (10lb weight gain). I was told that birth control pills help, but I've tried three kinds so far including one that is considered to be the lowest dose available and I have horrible side effects (diarrhea, nausea, ache, irregular bleeding) that make me more non-functional than the POTS. Does anyone know of a supplement or relatively side-effect free medication that I can take which may help? I'm taking licorice now, which hasn't really had an effect. I have hyperadrenergic POTS (my BP jumps and then plummets). I've had doctors prescribe exercise, high blood pressure medication (WHAT?), and all sorts of things- but I am always sidelined my the side-effects. Any advice? Those who are getting Saline IVs - does it help? Is it worth the hassle? Sara

Ernie - Scarily enough people can die from a psychosomatic disorder. Tests were done on this a long time ago where they told people they were bleeding to death and people actually died! The mind is a very powerful thing. That said, I really wish doctors didn't jump to psychosomatic disorders SO fast when the initial treatment fails. I was diagnosed with Asthma about 5 years ago - textbook Methocholine challenge test- yet when Albuterol sent my heart-rate up to 180 and I refused to take it, I was suddenly told I didn't have asthma... such fun. Maxine - I'm glad you found a doctor who can offer some help. I've found Orthopedists to be the most helpful as they know about EDS and can work from there. Best wishes to you. Sara

Denise - I know nothing about SSI hearings, but I hope you get the benefits you need. As for the mental status thing- you should talk to my boyfriend about how I get when my BP drops out. On top of things that look like seizures, I am MEAN! I can't answer questions coherantly unless they are yes or no questions and if someone makes me do something that I don't want to do, like get up from where-ever I have parked myself, I lash out. My memory is completely shot afterwards. My boyfriend has had to hold me down because I'm thrashing about so much and I've clocked him a few times. I've never been taken to the hospital over it and I don't know what my BP is at that point in time, but I'm 90% sure it's due to low blood pressure and stresses on my body. Sara

This is how I was diagnosed - or more accurately, this was the symptom that got me to the doctor and started me on the long road of tests to determine what I had. My RA saw me shaking - for me I could feel myself start to get "shaky" and I would have to lay down and I would be twitching. What I did, which didn't help, was prop my head up on pillows, so I still didn't get enough blood. When my RA called the EMTs they couldn't get a blood pressure, but since I was still talking they felt that their blood pressure cuff was broken! (I would have probably been diagnosed A LOT faster without that supposition.) I find that I now get them when I'm worn down. It's my body telling me that I need to rest. I'd get them checked out, of course. My neurologist said they weren't doing any damage and he wouldn't put me on anti-seizure medications because of the reproductive side-effects. Eventually, I've learned to recognize the warning signs and not let myself get so stressed out / worn down that I get them again. Best of luck! Sara

I don't want to be mean or anything - but I was told that some neurologists can diagnose a Chiari I malformation on almost any MRI. It's commonly diagnosed only when the doc is looking for it. I believe that a chairi malformation is when the brain herniates through the skull, but there are usually no symptoms associated with it. A good link is http://www.ninds.nih.gov/disorders/chiari/chiari.htm. They are mostly benign, and are found by accident generally. It's a very common problem in people with Ehlers Danlos. The only treatment for it, if it is very severe and causing symptoms is surgery, which we, in general, don't handle well. Best of luck to you. Sara

I used to have the same problem when I would have to raise my hand for a long period of time in high school. I have the same problems washing my hair too. I tried to take Tai Chi and having to raise my arms up for a long period of time made me get so tachy and black out. (That's always fun when you're the youngest one in the exercise class and you need to sit down but the 80 year old is going strong ) Any advice on good exercise programs - I had a black belt in Kenpo before the POTS hit and desperately want to go back to Karate. Sara