Lukkychrm42

Hi there, I'm a graduate student in England in the field of translation studies. Eventually I will be a full-time translator! (Sitting at my computer most of the day using the coolest parts of my brain )

I don't know if it would be from the zoloft- but these sweaty hot flashes are my most obvious symptom, mostly when standing or sitting!!

That is pretty cool! It is so disturbing when you meet with a doctor who barely listens to you, hardly looks at you, and says you're perfectly fine but then sends you off for half a dozen tests. And of course the ones who dismiss what you say by telling you it's either in your head or you're making a big deal out of nothing don't look at the vitals the nurse took, much less examine you themselves. In my visits in the UK so far, the only physical examination consisted of looking at my injured knee, for obvious reasons, and otherwise it's only involved talk. (Though they have seemed to listen to me, for the most part.) Of course there are plenty of American doctors who still ignore you while looking at your ears and eyes! I was reading somewhere about some people who would diagnose illnesses by tasting the patient's urine... don't know about that!!!

Many doctors are erroneously propagating the belief that BP must drop on standing with POTS. This is NOT the case- I didn't realize this until I was an inpatient at Vanderbilt Autonomic Dysfunction Center 2 years ago.

Like Sophia said, many people don't have high supine BP with midodrine- I'm one of them, and especially if you'll have to get up at all before or after the procedure, then it seems that not fainting might be better. I had an LP a few months ago, but I don't remember it. You are supposed to stay lying down afterwards, but maybe they'll put in a foley if they don't give you a bedpan. I was still seizing at the time, so I was held down (apparently) and kept convulsing afterwards, so of course when I eventually regained consciousness, I had nasty headache for a few days (which was supposedly due to the movement post-LP). If it makes you feel any better, though, that was the only symptom that I felt from it- I didn't have back pain from the needle. The vomiting started before it, and continued for some time, so I don't think it had anything to do with it, either, but just trying to get rid of the excess fluid. As for the bedrest, I thought that it might be a few days as opposed to several?

Benign doesn't mean harmless! In the case of POTS, it could just mean that it's chronic, not usually life-threatening, and not progressive. Of course, we most often hear the word with regards to tumors when it opposes malignant, meaning cancerous. But benign tumors can also cause problems- they, too, are abnormal growths in the body where the body hasn't designed for them. Many benign tumors have to be removed. I think your BF's high BP may be confusing, because we often think that high BP is so common that it's minor. For many people it won't cause dangerous situations, but as someone said, it does put one at a higher risk for stroke and heart attack. Of course, there are many POTSies who get high BP as a symptom while not as a regular feature of the body at rest (myself included), so in this way, classifying POTS as benign seems odd. Personally, I think that classifying illnesses as either benign or malignant is misleading due to the connotations. I think I prefer acute or chronic, or life-threatening or non life-threatening. But as you see, the REAL problem is rooted in the EITHER/OR dichotomy. If we keep relying on opposing terms, then we may forget about the variability that POTS entails (along with every other illness). WE know how we feel, and our good doctors can see it, both in our presentation and in our empirical features.

Well actually meat takes much more time and energy to digest, so that could be why it leaves you tired and dizzy. Maybe giving it up just for a few weeks would help you see if you feel better with it or without it.

Most sources classify tachycardia as a resting HR of 100 bpm or higher. In reality, I think, it's more relative than that, because I have a low resting HR, and if it's beating at 70 bpm when I'm trying to go to sleep, I can't sleep, because it seems to be pounding. Sometimes the heart can "pound" with what seem like forceful beats that aren't necessarily faster. I know I'm not DG, but right now I'm enjoying brief free time! When you're wearing a heart monitor, the doctors want to know when you're experiencing symptoms and what you're doing at the time. If you're having symptoms and don't push it just because you think your heart isn't beating fast enough, what use will it be to them in figuring out what's going on? Take care.

I take licorace, magnesium, and vitamin C, as well as melatonin. Licorace as in licorace root extract, which can be found in many health food stores or vitamin shops, in liquid form. I started on 10 drops 3x day, and my cardio moved me up to 15 drops 3 x day. My bp has been higher on this than with any other therapies I've tried.

Well, once again, as you can see in the title, it does not say "cures chronic fatigue syndrome." Rather, it says, relieves (def: to cause a lessening of) symptoms (def: sign or indication of disorder or disease). This was based on a small study done here, in which the patients did not know which chocolate they were eating, and patients evidently reported a lessening of fatigue while eating the dark chocolate. Dark chocolate has been touted in numerous studies, reports, etc over the past few years for its antioxidative properties and its effects on seratonin. I'm not saying that eating chocolate cures chronic fatigue, but at this point I'll try just about anything not poisonous to decrease the fatigue.

BBC news article Any excuse for more chocolate, right?

I know exactly how you feel! When a doctor who doesn't know you or your case sees a normal BP and HR and assumes that it means you are healthy, it really makes my blood boil! There are a lot of other chemical and physical things going on inside, which are also measurable by some tests, but they're not super easy to check for, and some doctors will say that if you're feeling bad but look ok, then it's all in your head! A good POTS doctor will know that this isn't the case, though, so I hope you've found someone helpful.

I'm glad that you're coming to terms with your illness. At the same time, though, talking through a traumatic past doesn't make the past go away either, so I don't think that having anxiety from one issue is more or less valid or treatable than from another. No one said that having a chronic illness isn't traumatic. (well, no one with an ounce of sense, anyway!) So while POTS imay be with you for the long haul, or memories of mistreatment or abuse for someone else, the anxiety doesn't have to be, so I think that counseling is just as appropriate for both. Keep up the positive thinking!

The nurse I saw was really nice, and even though she wasn't familiar with my diagnoses or medicines, she put me straight through to a GP to get my prescriptions sorted out. He didn't seem to have any trouble prescribing the Midodrine- maybe its status has changed, or else they'll tell me at the chemist that I can't get it .. He needed more info on the Adderall as he wasn't familiar with the brand, and the generic name was just "amphetamine salts", rather than specifying which ones, so I printed that out for him and asked Dr. A. to fax him a case summary and such. So anyway, while they might not help if I get worse or need something new, at least it seems they'll work with me and my cardio! By the way, I've got a low-income form coming in the mail so I don't have to pay for my prescriptions- don't you think that dysautonomia and other conditions should be on the list of exemptions for not paying for prescriptions (Addison's, MG, and some others are on it, but it seems too short to me! But there are other conditions requiring extensive use of medicines..)? I mean it's still cheaper to pay for them than it can be in the States, but it's still upwards of ?75 per year per med.

I'm so sorry. I'm glad they caught the embolisms, and I hope he continues to improve on treatment. I will try not to say anything trite and unhelpful, but I will say that I'm still sending my love and heaps of hugs. I know you're scared and angry- I would be, too. I do hope you're seeing someone you can talk to- that's not an insult! You've got a ton to deal with, and I'm amazed at how well you handle it. Also, I think it may be worthwhile for you to channel this into an opportunity. I think you should write your story and get it out as widely as possible- I'm talking magazines, pharmaceutical companies, MPs, etc... and make people listen. Spreading the word brings awareness, and awareness facilitates research, which could lead to treatment. That goes for all of us, but you're obviously not some American making a mountain out of a molehill (something that is often implied if not stated outright!) and if you can get your doctors to back you up, there could be some real progress. (And don't worry- it can be succinct and straight to the internet!) Hyperadrenergic POTS, being so much rarer, seems even less focused on, and that's terrible. (If I can help with this, I'll do anything on your behalf.) Anyway, I'm always thinking of you and your family. Please let me know if there's anything I can do for you!

Yup I'm here! I'm gradually learning to bring my umbrella wherever I go, too. I'm all registered and ready to start classes on Monday. My disability accommodations are still being processed (since I'm an international student, the money for them won't come from the local government or social services, but has to be found in the school somewhere), but while I am waiting for things like a shower chair, shopping and laundry assistance, and so forth, I have a tape recorder, my seat cane for the incredible number and length of queues, and preordering help for the library. I'm just remembering my last visit with a new GP in England (Lancaster), the one who told me that it was perfectly normal for girls to faint, and that only in America would they worry about BP being too low instead of too high. And who told me if I thought I was so sick, then why didn't I just stay home. TRYING not to assume Manchester will be the same way. I'll check out the stars website and let you know how it goes!! Thank you, ladies!

Hey there! I see a nurse for my new patient session tomorrow, and I was just wondering if anyone knows of anyone in the UK who treats POTS other than Professor Mathias? Doesn't have to be a specialist, just willing to work with Dr. A in Virginia if necessary. Thanks!

Thanks for posting that, Nina. How tragic. Love to her family and friends....

I'm interested in trying to go raw- at least more raw to start with, and I'd love to talk to someone else who's interested. I volunteered at the vegetarian coop in Boulder and had some wonderful food. I'm a pretty good cook, but sometimes I feel more satiated with cooked food. Hmm. I'm already vegetarian, though I was happier while vegan, and would like to go back to that eventually. We were talking about going gluten-free with the doctor and I can't imagine that a healthy, raw diet could hurt the dysaut. Happy weekend everybody!

That's cool. I would be afraid to try ones that didn't go over the hand as well, since the blood pools in my hands... it'd be like bright purple hands and white forearms! So we'll see. Actually I've been on this forum for 2 years now, and I am American. I just happen to live in the UK (or at least I will when I leave in a few days.) I've been seeing Dr. Abdallah for about 18 months now.

No matter how I feel at the beginning of the visit, I always leave his office feeling upbeat and optimistic. Yesterday I was put on Adderall after discussing my fatigue and concentration issues. There's hope that it may help the POTS symptoms in general, too. I am a bit worried about what it might do to my HR, but I'll let you know how that goes as I just started. We also upped my licorace concentrate from 10 drops to 15 drops 3x day. After finding a reference on another board, I asked him about a gluten-free diet. He says that he has a few patients it helped tremendously (who tested negative for celiac disease and allergy, by the way), as well as some that it didn't do much for, but I think it's worth a shot when I'm settled into school in a few weeks. He always reminds me of doing certain exercises to improve blood flow, especially on rousing in the morning and after meals, and also to elevate my bed, which I should be able to do with cinder blocks (again) when I get settled in. I don't suppose they make compression gloves, do they? as well as feet, my hands get super purple. I've gained some more weight (NOT a good thing- I'm already overweight!!, and since I seem so much hungrier and fatigued on my other meds (specifically the BB, paxil, and the birth control (not to mention that my chest keeps growing bigger with the birth control- as soon as i can, I'm going to be sterilized (I'm serious), though not because of that (and I'm "busting" out of a DD. and only 5'1". Yuck. ) ) So I'm kinda hoping that the Adderall might also take the edge off of the extra hunger. I hate feeling like this. One of my biggest goals is that reduced fatigue will help me to be more active in not feeling up to anything so constantly. I was super active just before my POTS got really bad and was diagnosed, and pretty much stopped working out cold turkey because of how I felt. Oh how I wish I could start again! Anyway, I've got good intentions and hope that the combinations of everything will work out so that I can have a fabulous year in grad school!! I'll let you know how the Adderall works!

I get them occasionally- sometimes every night for a week, sometimes a month without. More often than not, though, it's just regular and very mild. I need to sleep with blankets, but I always have a fan going and usually manage to be chilly enough to go to sleep ok. When they're really bad, though, the only thing that seems to help is to sleep wearing as little as possible and between 2 towels.

oh my that's awful!! I hope you recover well. They had better do this one for free, right?! Take care!!!

I guess it's risky, and blood products are often in short supply, so they're saved for people who are in grave need. With blood volume that low, though, with dysaut, I'm assuming it's causing problems for you... are you doing other things to "beef" it up?

I'd imagine that they probably just decided not to go for their patent again, and I doubt they'd do it if it was performing better than the generics, otherwise the $$$ would likely be worth it. I only ever tried the generic, too. Since it's prescribed for other illnesses, I wouldn't worry about it disappearing altogether.