leah1321

I was about to post on this topic when I saw your post. I have had POTS/NCS/many other disorders for years. I even had some symptoms as an infant. I got much worse when I was 15 and am now 23. I was steadily getting worse and worse. I originally had a type where I would go from remission to attack and back and forth. It eventually got to be a progressive, daily illness. I was so bad off...until I took Neurontin. It even looked like I was improving. I have done quite well, although it is clear that I still have POTS and I have some sort of autoimmune disease that has not fit into a clear enough pattern to get named . After a year of fairly decent health (maybe only 2 bad days a week, amazing for me, just crazy), I am now in a bad downhill again. I had a spell a week ago today that almost killed me. It was weird, I kept my wits about me even as it was clear that I had almost no pulse and had already lost my vision. I am so lucky that I made it because I was in the middle of Philly visiting colleges with my younger cousin. I had spent the four weeks before that feeling awful too. I also just found out that a bad 'sprain' that I had and went to the ER for after fainting was actually a broken wrist! I am so mad that the doctors were just so inept. 3 and half months later and it is still broken because I just had a proper X-RAY done now (they just did a terrible set of X-RAYs in the ER and only a PCP read them). Now I am probably headed for surgery- that should help my POTS flare up! Anyway, I feel your pain. Sorry that you have to experience this junk. Relapse usually does come for a little while, so look forward to the respite and make the best of life in the meantime.

I am like a vampire- I hate light. It bothers my eyes and exacerbates all of my symptoms. Fluorescents have always been my nemesis. They make me feel awful and, of course, are always in school, where I spend most of my time. When I was in jr. high, my school switched to fluorescents in mid-year and I started having migraines that were just crippling. Many other people who were healthy complained that they felt much worse during the day. I agree that soft lighting is ok. I cannot survive without my sunglasses and blinds. My eye pain is terrible when i get it. The supermarket thing- also agree that those lights stink. Sorry that I have no advice because there is no way to avoid these lights. They are cheap, bright and last forever, so great for businesses and institutions. Bad for us.

Hey Dawg Tired- I can't do soda or tea caffeine either. Only coffee! Weird, right? I think that caffeine does help raise bp. It also causes us to have bad symptoms. It is great in a quick fix, or if you have really low bp in the mornings. Vanderbilt told me to try caffeine every day. However, it makes me sweat in a weird way, it dehydrates very quickly (you MUST PUSH FLUIDS AFTER YOU DRINK CAFFEINE), it makes my hr irregular, and it bothers my stomach. It also makes my migraines better when used sparingly and it helps a huge amount with brain fog for an hour or two so i can get work done. If I am in the mall and I get dizzy or cold sweats or any other sorts of dysautonomia signals of low bp/low blood volume to the brain (perfusion or profusion? I think per-, but I have not gotten much sleep this week and am so so so out of it, sorry), then caffeine is fantastic. Again, remember to rehydrate because caffeine dehydrates quickly. The best thing in the morning is to drink 16 oz of water 20 minutes before you get out of bed and then if you still need caffeine, give it a try. Only have small amounts at first-we are very sensitive. Start with a half-caf and go from there. Caffeine amounts in different drinks is listed online. Just google it. You would be surprised.

I took a calcium channel blocker on and off for several years. Once before I was diagnosed and they suspected I had a heart attack and the other time it was given to me when I was having BAD esophageal spasms that felt like a heart attack mixed with food poisoning. My POTS cardiologist said that calcium channel blockers are horrible for people with vasovagal disturbances. I did develop a strange arrythmia and had almost constant chest/shoulder blade pain. That was the second time. The first time, I felt so awful that I did not know the difference between meds or no meds. When I stopped it, I did have less chest pain. My bp never changed on the calcium channel blocker. I occasionally have low bp, but I usually have high bp that drops suddenly to the lower end of normal. Like I go from 140/95 (that is my usual reading) to 105/60 in a short amount of time. I got the diagnosis of NCS because of that sudden drop. If I push it, my bp will continue to drop some of the time. Sometimes when I stand, my adrenaline kicks in and my bp goes up to like 165/110, so my calcium channel blocker experience might be different. Personally, I think beta blockers are best for us.

Hi, DHE is not very safe. Some people have terrible reactions to it. They dont use it very often because of that. However, I hear it works pretty well. I had daily mirgaines for years, most of them quite severe. I get hemiplegic migraines, which means I have paralysis on the left side of my body with some migraines. I often have weakness and blurred vision on the left side right before a terrible headache, even with meds. When I was at my worst, I was using a cane and dragging my leg behind me. I was only 20 at the time and this was awful. I have had migraines since infancy and they have been severe most of my life. Now to get to the what has helped: I cant take any imitrex like meds because I have high bp and unstable bp that goes to the high range is a contraindication with triptans. I can only take fioricet and percocet for my worst headaches. It works, but I can't use it everyday and I need more to work over time. So, I have tried a million different preventives, from nortriptyline (almost killed me) to SSRIs to calcium channel blockers. I found that the calcium channel blockers worked well but caused arrythmias and chest pain. I tried Depakote and Topomax too, but I put on 30 lbs in on two months (I was drastically underweight at the time, so it was OK. I am still trying to lose 5 of the lbs) and I lost half my hair. I was 21 and I think of myself as a pretty young woman and I thought I might want to try something else. THe Depakote also did not eliminate my symptoms. Now, I take Neurontin. It has done wonders for my health. All of my other health problems have improved with it. I stopped using the cane and crutches and go to the gym and walk around NYC now. I still have trouble standing and walking continuously, of course. I have frequent migraines, but not daily anymore. I have to take a huge dose of the Neurontin (1200 mg 3x a day), but it is worth it. My biggest side effect is that I am just about Narcoleptic. I need 9 hours of sleep or else. I also have times when I will get an aura and then instead of a painful migraine, I get this overwhelming exhaustion and a need to put my feet up or suffer so much. If I lie down and rest, I am OK. I have much less pain, much shorter and less frequent auras and I have had less migraines that land me in the ER. I highly recommend Neurontin. I also have bad muscle spasms and pain all over my body. I have bad TMJ as well from years of competitive violin and viola playing. I use a mouth splint/guard thing at night and take a small dose of a muscle relaxant before bed every night. This has been very helpful. I take ultram twice daily for GI pain and to help the nerves in my gut. It is a pain management med, so that is supposed to help the migraines. I also take a daily anti-inflammatory NSAID- Bextra. Last, beta-blockers are used to prevent migraines and they also help POTS. Mine is sectral, a med that also helps with adrenaline rushes. It helped my migaines when I first started it, but then the effect wore off. I hope that helped. I am 23 now and have gone through the gamut of migraine treatment. You might want to try massages and acupuncture as well to supplement your western meds. Some insurances cover medical massage and acupuncture when given by a doc. Both of those help me. I also use a microwavable, nice smelling, heating pad on my neck when I get a migraine. If my hands, feet, and neck are warm, my circulation gets better and my headache improves. One more thing, caffeine a few times a week helps when you feel a migraine coming on. Don't use it everyday or you get addicted! It works best when no more than 2 or 3 days in a row. My endocrinologist/gyne combo doc told me that caffeine is the best treatment for menstrual migraines. I know that was a lot, but I really hope I helped. I know how you are suffering, feel better soon. Leah

it works well for me. I have taken it about 15 times in five years, so no worries about weaning off. I take it for the worst of my adrenaline episodes with HIGH BP only and I also take it when nothing else will get rid of my esophageal spasms. I have had no bad side effects.

I take 1200 3x a day. It makes my tachy much better and my dizziness has improved. I am still in a huge amount of pain, but it has definitely improved (I have myofascial pain disorder and some osteoarthritis that might be rheumatoid, not decided yet). My migraines were causing weakness and paralysis on my left side. I was on crutches all the time. Not so since the Neurontin (except during one ankle bone bruise thing). I was having daily severe migraines with aura and I was suffering. Now, I still get migraines in groups every few weeks and at least one bad one once a week, but not daily and frequently less severe. I think neurontin has helped me exercise more and get to a more normal life (not quite but closer to 'normal'). I am having a lot of trouble losing weight. I exercise and eat healthy most of the time. I can't digest fats, wheat, or milk, so this should be easy. I am not gaining, but I am not losing either. I used to struggle to keep my weight up and then a different anti-seizure med-Depakote- made me put on weight very rapidly with little eating. I went up almost 30 lbs in a 3 months. I am now 5-10 lbs above my 'ideal' weight, but my weight just will not budge. It goes up a little and down a little based on fluid retention- that's it! Still, it is definitely worth it for Neurontin.

I have one and think it is important. I got it right after september 11th (I live in NYC) so that in an emergency, I would get treated correctly. If I pass out in the subway, they would not treat me as a drug overdose or something. I have used it a few times for bad headaches a few other problems. I love medicalert because they give me a card listing all of my medicines and conditions, my doctor, two other contacts, and allergies and you put it behind your license so they see it during an emergency. The phone number on the bracelet help the doctors find out vital information. My bracelet says Neurocardiogenic Syncope even though I am more of a POTS patient because paramedics and docs know syncope. I also have an allergy to aspirin, so I have that there. That has been very important as a few docs tried to give it to me and then the nurse checked my bracelet and saved me. I have on there that I am on anticonvulsants (neurontin) so they know to make sure that I get it or risk seizures during withdrawal (I take it for headaches not epilepsy) and I have no adrenaline written there but my card says use adrenaline only in cases of dire emergency. Funny thing- I constantly get complimented for my medicalert bracelet. People want to know the artist and where I got it and stuff. It is funny. I tell them it is a rhodium plated MRI safe medicalert bracelet and then they apologize and feel very uncomfortable. I paired the bracelet with another, really nice one, so I guess it looks like a real bracelet. Anyway, go for it.

My cardiologist told me that yawning is a symptom of dysautonomia. It is nothing to worry about, it just means you are not oxygenating because you are either hyperventilating or just because. He told me to take slow, counted breaths when this happens. Thus far, this suggestion has not worked. I have times when I yawn every few seconds for several hours straight. It drives me nuts and is a little embarassing. It is not a big deal though. I have POTS and NCS and have this symptom.

Hi, I get this a lot and really hate it. However, I have two suggestions: 1) raise the head of your bed, either with blocks or with foam wedges. It really seems to make a difference because you wake up and don't have to stand up and also it changes posture to reclining whichs seems to feel better to many of us. 2) get a pillow or teddy bear to put against your chest. I know that one sounds odd, but it mutes the feeling and sound of the palpitations and then you do not worry about them as much. They are still there, just not as scary. The water suggestion is great- try drinking a full 8 oz before you even get up in the morning. I suggest trying to drink it 15 minutes before you stand up. Maybe keep gatorade by the side of the bed for the mornings if you need an extra push. I hate this feeling and get it everyday, often worse after naps, but I think that the things I suggested, plus trying to keep the room you sleep in cool, will help.

HI, one, I wanted to know if you have had a liver test? Taking that much pseudophedrine is very very bad for you! Don't do that. It is basically speed. Have you had an echocardiogram? Maybe you have damage or other things wrong with your heart. Maybe you do have some form of IST. See a cardiologist. I had an ablation done for my arrythmias and it made it so that my standing heartrate does not jump from 90's to 200's in less than a minute. I still have an increase, but it is slower and not as dramatic. I also take many many medications that help control my POTS symptoms. Actually, I believe I have a more generalized form of dysautonomia that is autoimmune related. I have many GI symptoms, including two forms of dysmotility. I have Adie's pupil, I have adrenaline shakes and terrible insomnia. In fact, when I have the adrenaline rushes I cannot rest. I feel horrible, but I cannot take a break or I will just focus on my heartrate. I do not get dizzy with these until the crash (and the crash is bad, but much shorter in duration than before meds). Instead, I get terrible sharp pains in my head and migraines and flushing and many other problems, including very high blood pressure. My bp is high most of the time. I was initially diagnosed with VV syncope because I had high bp that dropped while I was standing. Mine went up first too and really went up. Then it would zoom down to something very low. Florinef controls these drops, but I do have high bp most of the time. My diastolic is scary a lot of the time, so I have to be careful. Another problem that dysautonomiacs get is diastolic and systolic narrowing- sometimes my BP will be like 110/105. This does not feel good. I take about 15 medicines a day and I now have a fairly normal life. I suffer almost constantly from terrible pain and I have a very restricted diet. I am practically nocturnal and need to take very good care of myself. At the same time, I get bad blood pooling in my legs that is very visible and painful. I do not get as dizzy or have the bad blackouts 40 times a day anymore, but I do feeling like c$#p when I stand a lot. I used to feel the worst sitting actually. When i would stand for a while and then sit, I would just lose it. Now, I push and push and push and even if I think I am going to die, I push more. I am 23, a grad student and a nanny and I need to do certain things. I can shop and I can walk two miles. I do rest and squat and even sit on the floor of dirty NYC stores, subways, etc. I mostly take the bus and ask for a seat. I am not better, but I am controlled. I am no longer bedridden and I have slowed the progression, but I am definitely getting worse. I think that people who are better and people who have been on these forums for a while no longer check them or post. I cant dwell on it too much anymore because I have read so many books and articles and know my possible future and I get upset thinking about it. I think you need a cardiologist and neurologist and put those FIRST in your life. Working is very important, I understand that. But, you need to know what aggravates your illness, why you got sick and what your prognosis is. By the way, what do you mean when you say you feel awful? What symptoms bother you most? You should look into many different forums and monitor them for a while and see what seems like a good plan for you. I did that 6 years ago and I was able to figure out a gameplan from my sofa when I could barely stand. I hope you feel better soon and discover what it is that makes you feel like not you anymore. Leah

Hey Neurontin has been amazing for me. I find that it controls many of my symptoms. It definitely makes me dopey, but if I stay at the same dosage and do not have any sorts of other illnesses that affect my absorption, then I am fine. It takes about 4-6 weeks for the dopiness to completely dissipate, but it decreases each day. I take 3600mg, prescribed for daily severe migraines, and I found that at helped my dizziness, chest pain and migraine aura. I still have breakthrough symptoms and am not perfect, but I am doing so much better and all because of neurontin. Good Luck. Leah (PS, sorry I have not written back. I had strep throat, staph on my foot, a sprained wrist, i moved, and my cat just passed on today after a terrible end the last few months).

warning: it's nickname is "side-effexor." I was told to try it for my fibromyalgia problems, but I refused after I did some research and found it was very hard to stop it and that it had some bad side effects.

yes, the ANS affects pupil dilation. if one is bigger than the other or does not react appropriately to light, it is a sign of ANS dysfunction. some people just have large pupils for no reason and sometimes this is a sign of dysautonomia. eye docs never look for this. when i am bad, my left pupil dilates and becomes sluggish. a neuro-opthamologist saw this and thought it was 'curious.' my mom and i did a search with my symptoms including the eye thing and found dysautonomia. we ignored this and were amazed when i got this diagnosis almost 2 years later! it is a benign symptom and should not cause any discomfort. if it does, see a doc. (slight blurriness is not unusual).

Congrats!!! Go You! I took an online class and I actually found it more difficult to focus on and the constant computer screen made me feel lousy. I also like human interaction when I go to school. Remember, there is no hurry to finish. Enjoy your time in school. I suggest getting a bachelors in what you love and then figure out what you can and can't do later. You have no idea how you will feel in the future or what kind of accomadations jobs and schools will make for you, so go for it and let time tell you what is what. Apply to schools and find out what their disability office can do for you. I never took tests with other people and mine were untimed. My professors knew I was sick and most were very understanding. I just finished my BA at Columbia U and am going to grad school in museum studies and material culture next year. I would love to study medicine or nursing, but know I can't. My passion is American History and art, but I also thought it would be a hobby. I will love having it as a career though. Decide what you want to study for a while and go for it. Good for you!

Hey What school did you go to? I just graduated Barnard (after transferring from Johns Hopkins) and live in NYC. I will be going to a graduate program for decorative arts, material culture and museum studies in NYC next year and will live on the upper west side. I turn 23 next month and have been sick since the second half of tenth grade (I guess I was 15 and a half. WOW 7 and half years I cant believe it!!). However, I got sick gradually and had some symptoms as an infant (GI problems and severe migraines). It has been a long and hard process. If you live on Long Island, I suggest going to St. Francis Heart Hospital and seeing either Dr. Greenberg or Dr. Levine (my doc who diagnosed and helped me initially). Anyway, email me at mastergaia@yahoo. Leah

Donate your time, not your blood. I volunteer at the blood drives and help the red cross with whatever they need, from food restocking to alerting them when someone is ill to registering people or even rushing the blood to the carriers or hospitals. They are desperate for volunteers and cannot run as large a drive as desired without people helping. You would get very ill if you donated blood, so help the best way you can! (there are so many 'healthier' people who also cannot give blood, so don't feel bad)

I think zelnorm helps me, although it is more like a bandaid than a real solution. I would like something better. I actually take ultram (an opioid pain killer) for GI pain and lower GI distress/rapid motility. Without it, I suffer so much. A dr. at JHU gave it to me, but he left there, I think. I take zelnorm because my stomach is almost paralyzed and eating is terrible for me (although that has not seemed to stop me. I could eat chocolate through just about any level of suffering- I am just unable to follow instinct). The zelnorm pushes the food through and makes me hungry for real. I take a 1/4 pill before meals and before bed. The only side effect I had was emotional lability and that was in the beginning only. You should weigh the negatives and positives of any medication and decide if it is worth it.

Be careful: when in the water, you have no gravity pulling the blood into your feet. When you get out of the water, the blood rushes back into your feet and away from your head. Have someone with you in case you get dizzy or faint. I black out every time I get out of the water but feel pretty good in it. Also, cold water is bad bad news for us. Lastly, I suggest you try physical therapy to get more muscle tone in your legs first. I have been able to build up a lot of tolerance with a series of leg, hip, abdomen and neck exercises. It is a very slow and frustrating process, but very worth it. If the pool works for you, then do it frequently and start very slowly and build up to a comfortable level then push further. Good luck.

I tested positive through all the blood tests to wheat intolerance and celiac sprue. I have almost every noticeable symptom (I even developed Depression for the first time ever earlier this year) and I found that the most bowel distress seemed to link to either milk or wheat products (I guess I am intolerant to both). My endoscopy was inconclusive and my doc decided that I have a 5-10% chance of having celiac and told me to stick to whatever diet I wanted and that she would retest in five years. About six months later, I was getting bad again (after adding many GI meds to control symptoms) and I decided I had enough and that I would eliminate things from my diet in hopes of finding something that was killing me. I then talked to my doc about this and she said that many people with motility disorders have wheat intolerance in a form very similar to lactose intolerance. I eat spelt and oats, two grains that celiacs usually avoid, the former because it contains a gluten that is a distant relative of wheat, and the latter because it is grown in the same fields as wheat in some places. Many more places are no longer doing this with oats and I pretty much only have organic, special grown, wheat-free advertised oats. I avoid barley and rye in addition to wheat. I am not able to keep away from it long-term because it 'shows' up in my food at different things and I realize it later or knowingly have a taste. I had about two and half straight weeks without wheat so far and that went very well. I was popping anti-emetics and tums like crazy for my nausea and now I am not really doing that a lot. I also have much less pain when I go to the bathroom (sorry), although I still have a lot of GI pain in general grrr. I am much more cheery as well and I noticed that after and then linked my Depression to the wheat thing. I do think many of us have GI problems, but I guess it couldn't hurt to try a no wheat diet. It is more expensive and very difficult to find/follow in many places. I don't care when I feel better eating this way.

Hey, I get daily migraines and frequent terrible migraines. I have been taking neurontin for a year and a half and it was a life-saver. I was limping from the weakness caused by the auras from my migraines and I was losing my left arm to the same thing. I went to the ER 13 times in one year and I was really suffering. Now, I am still suffering from migraines, but less frequently and for shorter lengths of time (although I just had a killer week-long one that required some rolling around in a hospital bed in the ER). I take a lot of meds to prevent migraines and other pain, but I still have almost constant pain and lots of aura, except I have improved a lot. I have had migraines since infancy and I think they are my worst POTS symptom (of course there are several things I say that for hehe). Also, yey for the pregnance. Go to a high-risk OBGYN- they deal with bad hearts and diabetes and other complications in pregnant women, so they will treat you well and will understand that you need special care. Demerol is like morphine and is used for pain. They use it in deliveries for women who do not want epidurals. It usually comes in a shot form. I like it because it does not cause as much nausea as the others and it wears off quickly (but will often lower or eliminate the pain first and then the dopiness gets better quicker). I think triptans are bad for people with unstable BPs so stay away, I think. Also, pregnancy seems to be your trigger, so either avoid that in the future or be prepared for pain. (not commenting on your choice, just joking around in the form of a headache journal.)

I too am frustrated by my inability to lose weight. When I first got sick, I could not keep the weight on, no matter WHAT! I quickly lost more than 30 lbs when I was only 17 and this was over a few months. I constantly struggled to keep the weight on...until I took Depakote for my headaches and left-sided weakness. In about four months, I acutally ended up five lbs away from my original weight pre-illness, only this time I felt gross. I lost a bunch of hair and decided to quit Depakote because I did not want to be a bald, fat 21 year-old hehe. Anyway, I lost some weight immediately and then nothing. I exercise regularly and cannot digest fats plus I still really only have supplements for one to two of my meals everyday. I think our metabolism slows and then we are screwed. However, if you are bothered by your side-effects, you should stop the medicine and then you will probably lose a bunch of the weight and end up just a few lbs short of your comfort zone (like me) or you will end up your old weight again, who knows. In fact, a new medication may help you lose the weight. If the benefits of the Lexapro outweigh the bad (a little pun there), then stick to it because health is more important. I know how frustrated you are though. I was having like 1200 calories a day and exercising on Depakote and I still put on a bunch of weight. When first sick, I ate 3500 calories a day and lost weight. Who knows how our bodies work?! Also, do you exercise? Try doing some pilates, yoga or slow walks because they feel good and are good for you too. (I am not accusing or blaming or any of those things, just saying I have enjoyed these)