MomtoGiuliana

michiganjan The go-go-go feeling you have I guess I also had in a sense when I started an SSRI (except I was homebound and at the same time exhausted). For me it was more like severe agitation and anxiety, that I had to manage by taking small doses of xanax from time to time. That was a side-effect for several weeks. It took two months before I saw a benefit/started seeing a reduction in POTS symptoms. I also asked my doctor about this! He said it was a common side-effect, especially for POTS patients, and prescribed xanax to use sparingly as needed. I don't think this start-up side effect is dangerous, but it is certainly uncomfortable. I also had sleep disturbance at night and then was extremely sleepy during the day, especially in the afternoon. Katherine

goldicedance--two years ago when my POTS was bad--YES. A prominent symptom. Katherine

Achiness and muscle pains, feeling hot or cold, flushing, and of course fatigue are also POTS symtoms. Obviously a sore throat and swollen glands are not. If it doesn't go away after a few days or keeps returning, probably needs a doctor's attention! Take care you guys! Hope you are both feeling much better very soon. Katherine

Obviously some jobs are easier than others when you are faced with this condition. A job that involves frequent standing and a lot of direct interaction with the public is very hard if you have episodes where you need to sit, etc. I was also a teacher for awhile. I loved it and have considered going back for a Master's in Ed and going back to teaching, but, I am having second thoughts b/c of POTS. I know how much energy teaching takes on a daily basis (and how much time you spend standing!) to do it well. Fortunately I have a desk job. It does also involve field work, some interaction with the public and testifying at public meetings. But, most of the time, if I really need to, it doesn't hurt my performance to sit down and rest for a few moments. It is important that your supervisor be told of your condition and possible constraints, I think, so that your behavior isn't mis-interpreted. I think others on this forum may be able to guide you re disability regulations/laws and what kinds of modifications your employer may be obligated to make for you. I agree that there is nothing you can do to help others understand, unless they take the time to be concerned. But, I also don't think that people will automatically assume you are lazy if you say you need to sit down because you are feeling light-headed or un-well. They are more likely to be concerned. There are medications that are likely to improve your condition. Hope you can find a knowledgeable doctor who can diagnose you and help you find appropriate treatment. You probably don't have to live your life with intolerable symptoms. Katherine

Julia59 To answer your question, honestly, I don't know what class nitrofurantoin is in. The urologist I saw prescribed it long-term to prevent new infections. I took it for months (eventually my bladder went back to normal and I didn't need to take it anymore.) Katherine

Karen I haven't taken an antibiotic for 2 years. 2 years ago I had pretty bad POTS symptoms. My bladder wasn't emptying property (probably a combination ofPOTS and a c-section). I was put on Tri-mox and had a great worsening of symptoms just as you describe. My doctor then truly thought I was insane, when I described them. I remember in particular this buzzing sensation in my head, along with flushing and worsening of dizziness. I finally got off of Trimox and on a different medication to control infection (after seeing a urologist), and didn't seem to have a bad response to that (nitrofurantoin). Katherine

very blue There are probably many possible causes for this. Could you simply have an infection? Have you seen an opthamologist? I have a good friend whose mother has Sjogren's syndrome. My understanding is that it is hard to diagnose b/c there is no blood test for it and symptoms and intensity can vary greatly from patient to patient. Dry eyes are one symptom, but since it attacks the moisture producing glands in the body, there are other symptoms associated with that as well. It is not life-threatening, but it can't be cured--just managed with eye drops, etc. Anyway, you are pretty young for the profile of the typical patient--it generally affects women in their 40's and older. It would be diagnosed, btw, generally by a rheumotologist. BTW, an ANA test does not rule out all autoimmune problems. I believe it only rules out lupus-- perhaps there are some others as well. But there are many autoimmune diseases. I would suggest seeing an eye doctor as soon as possible and not to wear your contacts until then in case it is an infection, or if not, to prevent one. take care, Katherine

Jessica I know those symptoms all to well. I had flu-like symptoms during pregnancy and post-partum (horrible fatigue and achey to the core--I know exactly what you mean). Now I know they are all POTS-related, and may be in your case too. I hope they are passing. Glad you are getting the swollen lymph nodes checked out. Since you felt well with POTS in your last pregnancy, chances are you will this time too. But, the first few months may be the hardest, b/c of the fast changes in blood volume? I think this is one reason why most women feel very fatigued in early pregnancy. Please don't put too much responsibility on yourself. I also tried to do that. I was in denial about how much help I needed and how ill I was (of course, since all my doctors told me what I was experiencing was "normal" I decided, oh, ok, this is what everyone goes through, I must just be a weak person) and forced myself to work full-time until 7 months, when I was almost literally bed-ridden with fatigue. The good news is that we know our condition will not affect the health of a pregnancy. But for your well-being, please, find ways to slow down (meaning--you may have to give up some of your activities--even school, for awhile) -- and ask for help. I wish I were nearby so that I could help you out with Ethan, and other things! I am glad your parents are near! Salt intake, once my endo suggested that to me at around month 6, really helped me a lot during pregnancy. I put it on everything. I guess you may need to be careful about over-doing that, it may be a fine balance during pregnancy (I still wonder if my high salt intake resulted in the spike of high blood pressure I got towards the end). So, make sure your doctor is involved with that. Take care and I hope you are feeling better each day. I have a feeling you will be. Katherine

Beverly You're welcome. It is easy to be empathetic after going through this yourself and knowing how so very hard it is--and wishing that not another person on earth ever has to experience it. Yes, there are so many causes, and some that are probably not diagnosable/understood. I guess the primary causes of flare-ups though that should be ruled out or treated aggressively (according to material from Johns Hopkins that my doctor gave me--I'll mail a copy to you if you want to e-mail me your mailing address): allergies, infections, undiagnosed autoimmune or other conditions. The document is about 20 pages and says it is a summary of what is known to date about POTS/NMH/CFS. I found it helpful when I was first diagnosed, in particular. I think for me, it was a combination of time, low dose SSRI and beta blocker, and slowly stepped up exercise (yoga and walking) that got me back on my feet. In my case, it was very clear that my symptoms were brought on (for whatever reason) by pregnancy and probably also the c-section. As time went on, my body healed from this stressor. Anyway, of course, that is my assumption--my doctor is not willing to say that that is definitely what caused me to develop such debilitating symptoms. I still have to do certain things to stay feeling as well as possible: increased salt intake, at least 8 hours of sleep/night, regular exercise, regular intake of fluids, beta blocker, low/no sugar diet, minimal stress at work and home. And still, for reasons that pretty much elude me, I have episodes of relapse, that are thankfully short--hours to perhaps a day at most--where I have worse symptoms. But, never so bad that I am home-bound anymore these days. Take care and keep writing to us. Katherine

Rita My POTS doctor also suggested I try that exercise. I did try it for several weeks and didn't notice any profound changes so gave it up. You're right, it doesn't hurt, so why not try it. It is so interesting how some treatments are useful for some people but not for others. Ling--I so hope this works for you. Please let us know. Katherine

I don't have much to add, except to say that I also still experience episodes of frighteningly profound fatigue. It is made more difficult being a parent of a 2-year old. But, overall, I am quite well now. When I was at my most ill I was also bedridden for months, some days unable to sit up, my mother caring for me and my infant daughter. I hope Nicole begins to see improvement very soon. It sounds like that is going to involve finding the right treatment, which you may not have found yet, and perhaps identifying and treating whatever underlying condition or illness may be causing POTS to flare so badly for her. My POTS doctor has told me in the past that MANY POTS/NMH cases are treatable (e.g. the person can be brought back to a functional level--not necessarily "cured"), but each case is different. Only about 50% of his patients are improved with low dose SSRIs and beta blockers, for example. He said there are 20 or more different medications that he prescribes--plus other treatments (e.g. compression hose, salt, fluids, physical therapy). He told me that in general, the cases he has found resistant to treatment are those that seem to be brought about by brain/spinal damage or malformation. SO, this gives me HOPE that Nicole and others can improve--either with treatment and perhaps with time. She is fortunate to have such deeply devoted parents. I know how hard it is for you, Nicole's Mom. My mother had a hard time with my illness. Instead of enjoying her first grandchild in the normal way, she tirelessly cared for both of us for months, not knowing if or when I would get well. I hope you are getting adequate rest, exercise, etc. yourself. Katherine

Interesting comment. Again, just keep in mind that colic is common in the general population and also more frequent in industrialized societies than in non-industrialized societies--so colic probably has multiple causes. If colic is a sign of nervous system dysfunction then this is good news for my daughter since she was completely free of it. Katherine

Amy No I don't think you can edit a poll--Michelle (or someone) will have to delete it for you or edit it? You have to put each option on a different line when you write out your poll, which I guess you now realize! Just a comment on your question tho--colic is soo common in the general population that it may be hard to make any connection to POTS. Interestingly, I have read that colic is more common in the US and industrialized countries than in developing countries. The possible reason, I have read (see Our Babies, Ourselves--very interesting book--a compilation of pediatric ethnographic studies) In our culture, we don't touch, hold and caress a baby as much as a baby is handled in non-industrialized cultures. In non-industrialised cultures, children are carried all day and slept with all night. In our culture, they spend much time in cribs or other contraptions. ALSO, I think there is probably a connection of increased colic with bottlefeeding as opposed to breastfeeding (right, Jessica?). I wonder if the handling associated with being carried so much, breastfed and slept with, affects development of the nervous system? Maybe that's where the connection is? Who knows. Katherine

Can you try a different SSRI at a low level? I think that has helped me with the bad anxiety as well as just toning down my overly responsive nervous system. I had to take it for awhile though for the side effects to go away and the benefits to start. I take 20 mg of Prozac. Sorry you are feeling so badly.

Try not to worry too much about weight gain during pregnancy. Your body knows what it needs. I also gained almost 80 lbs. It did kind of freak me out towards the end, but, I think you have to trust that your body is giving you the right signals--just eat a varied diet with lots of protein and fresh fruits and veggies, as I know you are! Take care, Katherine

Jessica Being absolutely zonked in early pregnancy is very common. It probably isn't related to your POTS. But, also, as you know, your body will also be working everyday in the early months especially, to greatly increase blood volume--if the blood volume isn't coming up fast enough, that can make you tired (as we all well know). Have you started your pre-natal vitamins? Hope you can find some good relief for morning sickness. As far as it being worse with one gender or another, I don't think there is any connection. I think it has more to do with your pregnancy hormone levels (morning sickness is generally a GOOD sign that everything is going well with the pregnancy) and how your body responds to them. Sounds like things are going well now. Katherine

hayley So sorry you are having such a difficult time. I don't know what your history is exactly. But, it sounds like you need to see a specialist who will be pro-active in helping you find a treatment that will help you. Regarding blood pressure, I have experienced both significant increases and decreases in blood pressure from sitting to standing. I suspect it is common with POTS to have such large variations in blood pressure, as it is something we don't regulate too well when we are in a flare-up mode. Have you had a back injury in the past? I also remember having strange, very painful back pain episodes when my POTS was very bad. It was also blown off by doctors. I don't have it anymore, but I still wonder what in the world was causing it b/c it was quite painful and I have never injured myself. Thinking of you, and believe better days are ahead for you. Katherine

Danelle I am not at all surprised that it may take awhile for you to recover to a functional level if you have weathered this condition for 19 years with no diagnosis and treatment. While each of us responds differently to this condition, I think one thing that seems pretty typical is that it waxes and wanes, often with no recognizable triggers. I think you have every reason to believe that it WILL improve for you over time. I also went on disability -- for nearly a year. Now I am working part-time. Some days are still pretty hard, but I have good days too. Don't be hard on yourself. Believe your body will heal in its own time. Merrell's quote selections are great--often living in the moment is all we can do--this is very hard--but sometimes it is ALL we have control over. Katherine

Thanks Merrill. I had a thyroid biopsy done last December and I wasn't thinking or aware of this issue. I had several shots of the stuff with epinephrine in it and felt awful for several days afterwards--I think this probably set me off. Knowing the name of the alternative will come in handy for me for sure! Katherine

Cold-turkey quitting of a beta blocker, especially a larger dose, can be dangerous, but weaning off of it or cutting back slowly should not be. The symptoms you describe do sound like they are connected to the effects of the beta blocker. What is your blood pressure--is it also very low, like your hr? If both are very low, you probably need to wean off the BB a bit, under the supervision of your doctor. Dehydration, even when taking fluids, is very common with a bad bout of POTS. I also experienced that. Keep up the fluids as you have been as well as plenty of electrolytes. My doctor originally told me to try to drink 3 liters of fluids a day! Can you try to increase fruits and vegetables in your diet? That seems to help me more than drinking a sports drink. If your blood pressure is low, adding more salt to your diet will be beneficial too, by increasing your blood volume as well as pressure. Hope you are feeling better. Katherine

Hi Jessica I was away for a long weekend and am just checking in! I was wondering when we'd be hearing about #2. That's great news. By the time the baby comes Ethan will be (hopefully) a smaller handful than he is now. I hope you feel as well overall with this pregnancy as you did with Ethan. I hope your cardiologist can answer your medication questions for you and that you can find affordable prenatal care, which is doubly important since you are essentially "high-risk" or "higher-risk". I do think that preeclampsia is most common with first pregnancies, so perhaps you won't develop it this time--I hope. You will find the energy--it is amazing how we do, some days tho. Let us know what your doctor says about the medications. Katherine

I agree so much about the sugar thing. Thanks for describing your experience, MichiganJan. I am also a sugar-craver--or was until my doctor suggested I try NO sugar (except fruit) in my diet. You're right, at first it was HARD. But it does get easier and after awhile anything with sugar in it is not as tempting anymore (although, like Julia, I will not give up a bit of chocolate once in awhile--or licorice!). It is almost like giving up an addiction, I guess. Also, I agree about the exercise. As hard as it is, it is so very important for people with our condition to exercise when possible (when you aren't in a downward trend). I started slowly and got to the point where I can now, for example, climb three flights of stairs at work as quickly or ever faster than others in my age group, without feeling horrible afterwards. I use the stairs all day to get from my office to the other offices I need to access for my work. I also walk on my days off now (with my daughter in tow--sometimes this includes a bit of running too ). Yoga is a good way to get started and continue with, too. Katherine

JR Many cardiologists are not familiar with POTS (my experience). You will need to see an electrophysiologist, probably, to get a diagnosis. Yes, there can be symptoms associated with blood pooling below the heart, besides tachycardia. Dizziness, fatigue, weakness, breathlessness, lightheadedness, and other symptoms. Good luck and keep asking questions if you need to! Katherine

I believe the defining difference between IST and POTS is a positive tilt table test. If you have a + TTT, it would be POTS. Can he order one prior to your next visit with him? Katherine

Find ways to reduce your family's contribution to hyper-consumption -- which not only degrades our planet's resources but is also stressful to you! And, dare I say, can really take away from the true spirit of the season. One thing we are doing this year is that each family member is giving one gift to one other family member (via a randomized selection process!). So we will each get and receive ONE gift. I love it. Children are not included in this. And my sisters and I all agreed to do "stockings"-- we will each give one small gift for each sister for her stocking. I really try to pace myself and not make commitments I might regret later--e.g., too many events/parties/get-togethers (either at my home or elsewhere). As far as decorating and cooking, I prioritize--by asking myself which things are most important to me and doing those things first. I don't do any gift shopping at all in December, unless it is on-line. I can't stand long lines or crowds. I so agree with Jessica--try to first of all enjoy the spirit of the season, and be mindful of the hype trap!