masumeh

Flop, If you're starting Midodrine, you can find information online in English. ProAmatine (the brand name in the US) has a website with info. Also, make sure you are prepared for a rough week or so, if you can choose when you start it. If your body is responsive, you might feel horrible for the first week, until side effects taper off. Did your doctor tell you about the side-effects? It feels like extreme goose bumps. For me, 10 minutes after the first pill, the bumps started. An hour later, I felt like my hair was flying and even like there were goose bumps on my teeth! This was funny at first, but after a few days, I felt like I was going to go crazy. It also made me manic, hyper, and it was impossible to sleep, (that went on for about 72 hours and ended in a total crash). It all calmed down, but some of the good effects also died down a lot, and I started to faint again. I'm more sound sensitive on ProAm, but less dizzy, so it's a trade off. I cope with the sound issue by wearing ear plugs. Since I wear a scarf that covers my hair, ears, and neck for Islamic tradition, no one can see the plugs and it works well for me in malls, airports, and other noisey places. Is it easily availible from your German source? If not, you can also order it online with globaldrugs.com or other sources. For us in the US, that's much cheaper, and it's a very expensive drug (for my dose of 10mg/4xsdaily, it's about $5,000 a year w/out insurance, but about $1,500 a year from the online/non-US sources). I hope it works for you! It might help with your infection too. One great benefit I've experienced is that I don't get sick, as if it has fixed my immune system somehow. I used to get sick frequently, at least once a month. Now, I don't even get the flu when it goes around everyone else in my house. Good luck! -masumeh

Thanks for the replies. The test came back normal. So now that doc is telling me, "Maybe you just have a muscle spasm." I'm like, "Yeah, a three day long muscle spasm, and I can't move my toes or put pressure on my foot w/out limping?!" I'm gonna call my pots specialist tonight. I think it's just hard for the general care physicians to give adequate consideration to all our complications. For the fibromyalgia thing, I looked up the post on hose and muscle deconditioning. I do have deconditioning from pots. I also have Hyper Motility Joint Syndrome, which my pots doc said is related to the pots but not exactly a part of it. I don't know what fibromyalgia is, and couldn't tell really from the post, so I'll look it up online. But, I do have joint problems, and that's one reason why I went to the doc immediately (also bc of clot history). I have condramalacia (sp?) or cartelage degeneration in my knees, carpal tunnel syndrom in both wrists, subluxation-dislocation syndrome in my shoulders, and some other things (my patella also dislocates and subluxes, ie pops back in by itself). But I never had problems in my ankles, and this pain is in the middle of my foot, towards the bottom (like facia and metatarsals -ish). Wierd. Wierd that I can't move my pinky toe, and can barely move my other toes on that foot. And the pain shoots up all the way to my knee at night. Maybe it will go away by itself...that would be really nice. Well, wish me luck. And thanks for the replies.

I wanted to share this interesting med article I found. The full text is long, but these points were pretty much self explanatory for us, I think, since it basically describes many of us. The part I found most interesting was the, "Final pathway for CFS is dysautonomia," bc I didn't know that the relationship worked that way, like this doc seems to be proposing that all CFS sufferers are dysautonomia sufferers. ME/CFS RESEARCH FORUM REPORT Adelaide Research Network 3 - 4 June 2005 UNIVERSITY OF ADELAIDE Convenor: Alison Hunter Memorial Foundation Dr Michael Barratt MBBS FRCPA Medical Adviser, Alison Hunter Memorial Foundation Sydney Forum review: Current perspectives The keynote speaker was Professor Kenny De Meirleir, Professor of Medicine at the Free University, Brussels, Belgium. His clinic sees 800 CFS patients every three months, coming from many parts of Europe. He has 50 papers awaiting publication about this condition, many dealing with molecular biology as it impinges on aetiology, treatment and prognosis. This article briefly summarizes some of the large amount of current research into CFS presented at the Adelaide forum. Professor De Meirleir presented an epitome of over 5000 research papers on the topic since 1999. This disease has measurable physical abnormalities, contrasting with the dearth of adequate science in psychiatric claims. CFS is not primarily a depressive illness, or some sort of psychological problem. The abnormalities at the cellular level explain the clinical abnormalities. The biochemical and cellular chemistry confirm that CFS is a disorder of immuno-vigilance caused by low grade sepsis and chronic, mostly undiagnosed infection. It is a heterogeneous illness, a true syndrome, with a clustering of many symptoms and signs, and a large number of ?causes?. Especially, it is not a single symptom to be called ?chronic fatigue?. It may turn out that CFS is caused by many different diseases, just as ?all that wheezes isn?t asthma?. There is a chronic over-stimulation of an increasingly dysfunctional immune system: more activity, but less effectiveness. Activation of anti-viral pathways plays a central role, especially low molecular weight Ribonuclease L (RNaseL) and Protein Kinase pathways. The role of non-viral micro-organisms and even non-biological agents, like insecticides or heavy metal pollution, in activating viral pathways needs to be sorted out. The reactivation of latent viruses, and other micro-organisms, involves profound interactions between the brain and immune system. The gut is central to the initiation of CFS. Intestinal dysbiosis allows toxins, viruses, bacteria and heavy metals that must not enter the body to do so. The blood-brain barrier is defective, allowing molecules that must not enter the brain to do so. Herpes viruses play a key role in about 20% of cases with CFS. The Final Common Pathway of all the causes of CFS is Dysautonomia, i.e. autonomic nervous system dysfunction. CFS is a serious, legitimate illness, devastating to those who have it, with a slow and uncertain recovery for many. The spectrum of disease extends to the wheel chair and the bed bound, and it has a significant mortality, caused both by the often severe effects of the illness and by suicide. The extreme end of the condition is virtually unknown to even the most gifted and caring of the medical profession, who pass the ball to the psychiatrists from where they end up in anorexia or other clinics.

Hi Madeline! I just started taking Midodrine, and so far no persistent spikes in bp. But I read from some other posts (can't remember exactly who or when) that some ppl took it for years, then had high bp and had to stop. My doctor thought that after a minimum of 6 months, weaning me off the ProAm might maintain its effects because it "trains the blood vessels to act normally, even when the medication is removed." Are you feeling ok without it? If not, hope you find another med that works well for you! -Masumeh

Hi all! I have a bum foot these days, and there is strangely no swelling, redness, or bruising of any kind. Yet, I feel like I must have some kind of little fracture or something deep in the middle of my foot. I saw a doctor yesterday who suspects high uric acid, basically gout. But from reading online, it doesn't seem possible. Waiting for the blood test results. But did anyone w/POTS have gout? Could kidney dysfunction be part of POTS, and cause high uric acid?

Hi flop, Sorry you're feeling down. Regressing can be so emotionally trying. Maybe your meds aren't working well for you as they used to. Did you talk to your doctor about this? Perhaps you should try a new med. In the mean time, try to keep smiling! After all, two years with no fainting is a big blessing, and a great relief. I've been fainting for five years now, total of over 1,000 xs, and even on meds after diagnosis I still faint about once a week or more. Actually, I don't mind it. I mean, I know it alarms others, and it can be embarassing in public, but it's doesn't top my list of most hated symptoms. Of course, I'm highly aware of it, and the warning signs are always under calculation in the back of my mind. Be really careful when you first wake up....take your time sitting on the edge of the bed, gathering your wits (and blood), before you stand up to go to the bathroom. Maybe periodic fainting is more dangerous than consistent fainting, since you might not really predict it or prepare for it. Hope you get that lung infection kicked, so you can start feeling better soon!

Knowing how frustrating it feels to live with a mystery illness, and how much more social and family support there is for a diagnosable, physical illness, I want to off my congrats. It's a long road, but knowledge makes it easier. I hope now you and your doctor can find the right treatment plan for your case. Hope you'll be feeling better soon!!!

I take midodrine, 10mg 4xs daily. Ditto to what's already been said. I don't get dizzy from it. On the contrary, it relieves the dizziness. I do feel headaches from it though. And it makes me more sensitive to sounds. My doc said it's bc it gives blood to deprived tissues and that I am feeling this now but it was always there, dowsed by the lack of blood flow. But sometimes I do feel hyper, or like stir crazy kind of in my muscles. It has highest effects and side effects for the first 10 days. Side effects go away. Oh, yeah, the first week, I had shortness of breath, chest pain, and a flighty feeling with it...that went.

Couldn't really read everything that came before this....but wanted to make a couple comments: they laid you down for 10 minutes only? I thought it was supposed to be 30. That's what my doc did and he specializes in POTS (his staff members are very sympathetic bc some of them have POTS too). also, your doc sounds impatient. Why did he give you a drug instead of just waiting? that's wierd. My TTT was really awesome, for me, and had a lot of consequences for my understanding of my disease. there was one very interesting part, a little heart thing on my head, afterwards the reading showed the blood flow to my brain. It was, at one point, at about 65% deficit (meaning my brain was getting only 35% of the blood it should). This explains a lot. And I remember the nurse asking me if I need to quit, and I was responding, "No, I'm not going to faint. This is a good day. I won't faint today." I estimate that my bad days get less than 30 or 20 percent of the adequate blood supply. It was decisive and I guess for that reason I'm lucky that my case is kind of on the severe end (like, at worst, I was bedridden, worst functional, fainted 5xs/day, now, and at the time of the TTT, only faint 1/week except when ill or on menses). last point I wanted to make--your episode is not that uncommon, so I don't think you should be too scared about it. We just don't die from this stuff, I guess...it just keeps going and eventually we come out of it. My episodes sometimes last an hour or more. Peace, Masumeh

Don't know about dry eyes. I have visual disturbance stuff and light and motion sensitivity (can induce siezures). I've been having problems w/my eyes recently. I wonder if it's related to dry eyes? It's itchy and looks yellow. I saw an eye doctor here (probably not a very good one), without telling him about my other medical problems, POTS, etc. He said I have allergies, and the "yellow" is blood in the whites. ??? It tears when I read sometimes.

I used to get pronounced word recall problems...I used to feel that it was like a gap or diconnect between my thoughts and my tongue. I'd stop mid-sentence and ppl, even used-to-be-close friends would walk away freaked out. That was the first 6 months of POTS, the most severe period for me. It was a big change from the old talkitive, public speaker me. Well....it passed, and partly it helped to take classes that required composition (English lit.). I regained some of my old skills. I guess I had some brain damage going on and needed to buff up afterwards. I now know that my brain was probably getting about 20% the oxegen and blood it needed. Then three or four years after becoming solid and connected word-wise, I started getting memory problems in regard to visual images and number or counting. That's been going on for almost a year now. Like, ask me what my friend looks like, I can remember less and less. When I travel, I even forget what my husband looks like and get nervous returning home, that I might not like him if I see him. Thank God, I always fall in love at first sight....again. Counting...big problem now. Ask me how many times I took my pill. I can't remember, even if I just took it two minutes ago. I have to write important things down. No other choice for the time being. It coincides with a general deterioration of my health and increases in fatigue, nausea, sound sensitivity, fainting, etc. It might have to do with stress because it also coincides with some events in the family. Hope this can help someone. Thanks for the sleep comment....don't remember who posted it....but that gives me another factor to consider. Peace, Masumeh

Hi Morgan, Since this is a kinda old post now, I hope you're feeling better by the time of my reply. First I just wanted to comment that I feel for you, and I know that you've been through a lot, obviously struggling hard to cope and have patience. Hang in there! Secondly, I wanted to recommend that you try to find your own solution, because depending on doctors isn't always the answer. I'm not trying to be anarchist to the current medical system or anything...but even as a nursing student we learnt about the medical benefits of self-efficacy, the patient's feeling that he/she has control and power over his/her own health and care. As a psychology student, of course, we also studied this issue, especially in learning...but every part of life is effected by your self-efficacy, self-esteem and self confidence (all different slightly from one another). As a depressed person, you probably feel inadequate and loss of motivation. But, until you can rely on yourself, you won't find real help...because you're the one who knows yourself the best, and while it's beneficial to have validation and information from reliable medical professionals, it seems that this is a closed route for you so far. You still have yourself!!! What I did, that might or might not work for you, is basically I considered myself my own experiment and I just did whatever seemed to work until it stopped working and then tried whatever else I could think of. On my own, without a diagnosis or meds or a doctor of any kind, I got my fainting down from once a day to once a week. And I know that it is also the course of the disease itself at work, but I developed a lot of coping mechanisms (just a small example, I drank about 5 glasses of water by 8Am alone, not consciously but when I counted it, it was like that...just did and did until something worked). I'm not smarter than you or even more patient...and I'm sure I don't want it any more than you do....so I know that you can help yourself also. Not a cure...but at least a change. Good luck! masumeh

I think that if you want the orthostatic measurements, even though your doc might not need them to guage your progress/condition, you should go ahead and ask for it bc it's important to you, and you are the "customer"/client. But, when my doc's office conducts the orthostatics, they charge something specifically for that test (although it seems basic enough to me)...so, I guess sometimes it might just come under some kind of unjustifiable charge w/your insurance company? Maybe. Anywho... Another option, if it is important to you to monitor those numbers, I think you really should invest in a bp and hr machine you can use at home. My mom and I both have them (and I also have a heart rate watch, the sports kind, but it gives me the info I need). I also have my cuff and listening duhiky left over from my nursing days...and I trust them about the same for the number itself (although you get some extra info by actually listening).

hmm...well. i have to say, first of all, I really feel for you, it sounds like you have suffered a lot, for a long long time. sometimes there is just not enough medical knowledge out there....although we are in the "tech" and modern age, it just isn't covering all the diseases there are. second, i don't have some of the symptoms you mentioned, and although many of them sound like pots and what i've experienced, some stand out as something else...so it makes sense that your docs are saying it's more than pots. like, the purple eyelids, that's not something i have heard of connected to pots. but, the sleeping problems, bowel problems, fatigue and muscle weakness, nausea, hr and bp regulation problems--that sounds like good old pots to me. hope you get some answers soon.

It sounds like you got dehydrated, particularly when you stopped the pill and had to urinate a lot that first night. Florinef, as my doc explained to me, is meant to hold fluids in your blood, to increase your blood volume and prevent your body from peeing it all out. He asked me if I urinate a lot b4 prescribing it for me (the answer was yes, so the pill was added to my treatment plan). But I had just about all the possible side effects after just one day on it...so, now I have a florinef phobia and there's no way I'll ever take it again (sides included psychosis, lethargy, muscle weakness,....it was probably for the better bc I read that over time it could have activated my latent TB....yikes!!). BUT it seems like it really works for you and you might just need to push fluids for a while and try some biofeedback to tackle symptoms of anxiety, etc. (you didn't directly mention anxiety, but I assume that is the case from the zoloft prescription). Try breathing with your stomach, not chest. Can you stand Gatorade? It's the easiest way I know of to get hydrated. Hope you feel better soon!

I think that eventually POTS diagnosis will have many, many subtypes. One nurse told me that POTS just entered diagnostic manuals in like 1994, so what can we expect in such short time? I believe MOST doctors practicing medicine in the US still don't know about POTS past a vague relationship to fainting upon standing (plz, let alone the rest of the world, wherein, statistically speaking, most POTS sufferers are suffering without any right clue as to the disease and probably everyone is calling them nuts or weak or otherwise gave up on their health). But, back to the categories, we do, just in this forum alone, have so much variation, it probably goes beyond the origin (chiagri malformation or other congenital origins; accidents ie whiplash leading to nerve damage; viral infections sneakin up into the nerves; etc) and the main dysfunction (adrenal; blood volume; whatever). We are still all united under this umbrella of autonomic disorder, and many of us under the diagnosis of POTS. Whatever might come later in diagnostic subcategories, I don't think it's availible now. And you know, that's really very typical. Think about "a cold"...how many types of "colds" are there, and it's all from different viruses, we just call it all a "cold" because nobody cares exactly which virus you have. Now, you want to treat the cold, you have to examine which symptoms are bothersome, stuffiness? muscle aches? migraine? vomiting? fever? Which do you have? Which do you not have? Think about Downs Syndrome...it's that chomosomal abnormality, but do you know how many different variations of the disorder there are? Soooo many. There are just certain key features that justify the umbrella diagnosis. But every case is bound to be different. So, yeah, we are all different...but there are some key features that bind us together under one diagnosis, POTS. Like it or lump it, as my british sister-in-law sometimes says. Hey, for those of you who are British, what does that mean anyway? I hope "lump it" is not some kind of cuss word, is it? Anywho.... I think there's a touch of denial in your quest....some of us respond to meds, some of us have worse cases, more severe damage, or what not. It's kind of courageous that you want to keep fighting and challenging doctors for dx and rx that works to help you...but it also has a limit, I mean, a point where maybe that pill isn't out there because nerve damage can be .... well... You maybe just want to research for a while, but simultaneously learn to cope as much as you can as is. Time can also improve things...

I'm feeling for you! Thank God, I don't faint every day anymore. But my first year w/POTS was much what you described. Fainting every day (sometimes up to five times a day), dizzy, unable to coordinate walking, weak, constipated, nauseated, depressed, etc. It's really hard, and nobody's going to tell you otherwise with total honesty. Sometimes we just have to hang on to our faith, inner strength, distractions, and sense of humor, etc...and wait it out. We're all right there with you! As for the doctor thing, I personally think that if they've done all they can, maybe just taking a break is good for recovery, bc this forces you to search for coping strategies within, and it allows you much needed rest from the hope-disappointment cycle and all the appointments and med reactions. One coping strategy I learnt the hard way is not to allow myself any excitement, anger, or stress. I just had to learn to let the world flow over me. Any time I allowed myself an emotional reaction, I would get sick coming down from it. This is bc of the relationship btw autonomic nervous role in emotional reactions (not just fight or flight, etc.), as you know. But this is something no doctor can teach you. For the stomach problems, I had a really great gastro doc who told me to avoid raw fruits and vegetables, and a whole list of other things. Cooked vegies are good, processed fruits are ok. It really worked for my IBS. I also have to avoid all those little hard things in food (i.e., rice, seeds, nuts, anything hard). Also, to stay away from allergins, eggs and milk for me. If nothing helps, my advice is to just strengthen what the disease cannot take away from you, for one, patience, and anything else that you value that is manageable for you. (for me, it was writing, praying, helping by just holding a baby or listening to a friend, etc) I really, really hope you find some relief soon!

I saw doctor after doctor for about a year when I was first sick (4.5 yrs ago)...then I stopped bc I didn't get any answers from them. They just wore me out for nothing. It was an emotional rollercoaster and doctor visits were spending all ALL of my precious and rare energy. The best thing I did was get off that ride. Total, I would estimate I saw about 40 doctors, including ERs, primary cares, specialists (endo, neuro, cardio, pulmo, hemo, etc.), homeopathic, etc. They were all fairly clueless. Well, no, to be fair my hemotologists are good solid doctors in their field, and they've helped me with my thrombophelia, but this is not related to POTS, I think. Also my pulmonologist did his best...but hey, it's not his field either. Found POTS myself online three years after giving up on doctors and the whole search. I came across autonomic disorders in my biological psychology textbook and it sounded familiar. Otherwise, I had given up on modern medicine. But, my current doctor (found him through this site, THANKS, whoever made that list!) is really great and his office is full of POTS sufferers, the nurses and staff are patients too! He really truly understands what the disease feels like and so do the nurses. It's great! I recommend him, if you live near Virginia (Dr. Abdulla, he's on the dinet.org physician directory). But I have a question: what do you want them to diagnose you with, if you already have the POTS determined?

I just remembered that my friend once told me a similar story. She doesn't have POTS, but she has IBS and when it started for her, she had recurrent UTIs and blood in her urine, the scopy thing revealed inflamation in her bladdar and nothing else. She had some bad reaction to the antibiotic, but it eventually went away (I think as her IBS calmed down).

I don't have the problem you described. I do get UTIs during pregnancy, and that has caused some premature labor, etc. But, after the first one, I never could detect it, it's like asymptomatic (well, you know, when you're pregnant you pee so many times a day anyways). I hope you find an answer. If you are on florinef (I just read their warnings etc. on their site, so forgive me if I keep bringing this up), it can promote and prolong infections of all sorts. You could try an herbal remedy that boosts the immune system. The one I know of and trust is called "Black Seed" and it's availible via amazingherbs.com. The actually seeds, fresh, taste really strong and nasty, but if you chew and swallow 7 a day, it really fends off infections and boosts overall energy. Also, a UTI infection natural remedy that doctors endorse is lots and lots of cranberry juice. In nursing school, they even told us that they clean some machine parts (some part of the kidney dialasis machine, I don't recall exactly) with cranbery juice and that it does the same cleaning effect inside the body when taken orally just like a regular drink.

Yes, I get twitching in my arms, sometimes my whole body convulses. It used to happen a lot... Few years later... Now, it only really happens if I faint while I'm sick and just completely phsycially exhausted. Like, the "whoops, stood up a bit too fast" faints on good days don't have the accompanying convulsions. I don't know what these are; my EEG was also normal. I think it's just sensitive nerves.

Hmm... this is a really interesting discussion. Of course, ppl tend to have their own beliefs about the possibility of "others", ghosts or jinns or however you might define it and conceptualize it. But, I think it's best to stick to the scientific explanation when at all plausible. I have "jiggling" in my visual disturbance, and it comes some time before a faint. It's mostly in the periphery when it's not too bad...sometimes takes over the whole field of vision. This is really medical in origin. Not enough blood flow to the eyes and related areas of the brain is probable. Another possible medical cause is psychosis, as a side effect of medication or an underlying psychological problem. Florinef (I just got off it) has the possiblity of this side effect, according to the drug's website.

Heat is a big trigger for fainting. For me, also the sounds of a crowded room trigger dizziness and sometimes seems like a siezure. Anyway, embarassment from past public faints exacerbates (sp?) the problem, and I don't like parties anyway, so I just got used to limiting my numbers. I hope you find a solution that works for you. Maybe if you can find a window to sit next to and just crack it open a bit. Or come early, before the crowds swell and the place heats up? It's annoying having to maneuver around symptoms...especially if you have an outgoing personality and so forth. When I have to miss something I really wanted to do bc of POTS (or even other things in my life), I try to reward myself in a doable way...like one time I had to leave a wedding party almost as soon as I arrived...so I did something else that was fun...threw off all those uncomfortable clothes, undid my hair and just chilled in my grubbiest so I got the best of the evening on my own terms. Well...that works for a baggy clothes loving person like me. Maybe something else works for you, like whatever you enjoy.

100/60 is ok. if your systolic (the top number) drops below 90, then you are considered a bit low. (Mine was once 60/32...and I've noticed that a lot of ppl here have even lower experiences...hmmm...shall we limbo...neah...) Sorry for the corkiness...I'm a bit off my schedule

Hi all I just wanted to quickly recommend ear plugs for those of us who are super sensitive to sound. I am, and on the ProAmatine it's been somewhat worse. I have to fly home soon, and a few hours in a busy airport inspired a solution: Ear Plugs!! I'm really so happy while I wear them! I guess I didn't realize how bad the sounds were bothering me before. They're in like CVS and places like that.