Eli6596

Hi, I have had nearly exactly he same situations. I did have to laugh at the fish story. I have an 11 year girl and 6 year old boy. My girl has been always been super easy to discipline, and my POTs was not really bad until my son either. My son is very rough, strong willed, but loving. He loves to try to torment his sister, mess up her room, etc. Boys can be so difficult. Like you, my son quickly learned that I cannot pick him up or chase him well. Two things have saved my sanity and health. Preschool and now kindergarten channel his energy. Full day preschool was the best. The second thing that helped was a discipline system called 1,2,3 Magic. You should be able to find the book in any bookstore. It is very popular with millions of copies sold, I think. We modified the system a little to fit my son. My son hates timeouts more than spankings and yelling at him. We have stopped the latter two. He is doing well in kindergarten. Take care, Karyn

Hi, Sorry I didn't see the question until now. I did improve after the second pregnancy, so that I could get out of bed for more than just to use the bathroom. However, I never have recovered after the second pregnancy. It has been 6 years now, and I still have severe (per Dr. Low) POTS. The hardest thing for me was realizing that my symptoms were not going away after the second pregnancy like they did after the first pregnancy. The false hope really hurt me. It took me awhile to accept the permanency of the illness. I always say that I am grateful that I have healthy children. I much rather have the crappy health than have my children suffer from health problems. Karyn

Overdoing it and paying for it is one of my greatest challenges. I have to pace myself. I have to put my energy level on a budget. I know how much is too much, and do not overschedule myself. I limit my errands to a few on Sunday after lying in bed most of the day on Saturday, recovering from the workweek. If I absolutely cannot avoid an overdo of activity, I plan a day of vacation from work afterwards. I let nonessential things slide to allow energy for the more important things. I have learned how to budget my energy the hard way with trial and lots of error. You have an advantage if you can feel yourself on the "edge" before you crash. I don't usually know for sure that I am going to crash until I crash. I do know what is too much activity for me though. I just have to resist the temptation to overdo if I feel "good". Karyn

My kids got TONS of candy. I am eating as much as them!!!! I am sooooo bad. Does anyone else get more tingling with their neuropathy when they eat sweets? Karyn

I think that very, very few people, if any understand the fatigue that I experience due to POTS. I have found something to say that seems to work better than saying that I am tired. I say that it is more than fatigue. It is exhaustion. When I was 18 years old, I broke my pelvis in two places. POTS is a million times harder than that! In my training I used to work for 36 hours straight with no sleep and toxic, high stress of running to codes, walking around all day to round in one or more hospital, etc. The fatigue that I now feel from POTS is worse than what I felt doing all that before the POTS hit me hard! Before POTS, I would have thought that the pre POTS experiences were just so grueling. My point is that people just have no idea due to no comparison point in their charmed personal lives. They don't know how good they have it, because they have never had anything so bad. I know I had it so very good before the POTS, but I did not know how good until after the POTS. We take so much for granted. Now, I know that it could be worse even now, and try to be grateful for what I can do. It is all a matter of perspective. If someone complains of feeling tired, we could say, "Now multiple your normal fatigue by 100 and imagine that it will not go away for years, if ever!" Karyn

I like to take one big salt tablet instead of lots of little ones. My pharmacy orders the one gram salt tablets for me. Whenever I buy a bottle, I remind them to please remember to order another few bottles to keep in stock for me. I have always loved salt. As a little girl, I used to sprinkle salt onto my palm and lick the salt from my hand. My mom used to even buy me small salt shakers to take to school! That was in the 1970's so perhaps the anti-salt craze had not started then. When I mention that salt is good for me, everyone always says how they would love that. I then say that I rather be normal than have free rein of salt intake! Karyn

Congratulations! I had just the EXACT opposite pregnancy experience. The last 3 months of my two pregnancies were the worst POTS symptoms I have ever had. I was nearly bedridden, and my second pregnancy was much worse than the first. Despite 200mg of metoprolol per day, I could only manage to get out of bed to use the toilet and bathe. My children are healthy, thank God. My two pregnancies brought me the biggest joys of my life, my children, but also the greatest hardship of my life, POTS. Karyn

Hi, Well after reading these posts, I decided to try wellbutrin for myself. It gave me more energy and controlled depression but it made me really nauseated. I reluctantly had to stop it. I was also getting really MORE presyncopal. I don't understand that side effect. I am thinking about trying remeron next. I have already failed lexapro, effexor and prozac though due to feeling like a zombie on them. St. John's wort was working great but I have had to increase it every year. This year increasing it just did not give me the extra control that I need. I would be much worse off it though. Does anyone use remeron, or any other herbal type meds besides St John's wort for depression that seem to work? Karyn

Amy, Good thoughts. I don't know. Maybe some of us go into the medical field to help others because we know how it feels to need help ourselves. I initially went into medicine because I was simply fascinated with the science of it all. I thought I would do research with the M.D. However, over the years I have found ever deepening meaning and reason for the career than just scientific curiosity. Karyn

dizzygirl, I had to smile because I get witchy even without clonidine!!!! I think it is a symptom of depression for me. Karyn

It is interesting to read about your careers. I am a partime (that means 9am to 6pm daily in my career) neurologist who does not take call or perform hospital rounds due to POTS. I too was lucky that I had completed my training as a neurologist BEFORE POTS hit me hard. I would never have been able to get through gueling medical school and residency which required MANY nights with NO or little sleep. I am glad I quickly realized that I don't have a surgeon's personality. Many surgeons stand for long hours without food or going to the bathroom. Even sitting on a stool for hours would make me presyncopalnow. Plus, wearing the surgical masks is hot and makes breathing difficult. Holding the retractors during surgery as a grunt medical student was absolute torchure for me. In retrospect I had very, very mild POTS symptoms before I completed my training which really only manifest itself while standing for hours during surgery. I tried to hide from being selected to help in surgery, not realizing that not everyone felt sick after standing in one spot for hours! I like the suspension idea...haha. A good area of medicine for a doctor with POTS would be a radiologist or pathologist BUT I think you have to do what you love...if you can physically. A radiologist or pathologist could sit all day. I can relate to the idea of wanting to be a lifelong student. I loved school until the bootcamp of medical school. Karyn

dizzygirl, You said that clonidine sometimes affects your mood. In what way...depressed? Anyone else have mood changes from it? Karyn

Suzanne, I have had a similar reaction each time after the flu shot. I would have to take 2 weeks off work if I wanted to subject myself to another one. I hated to mention that in my previous post too. Karyn

On the topic of viral infections, I just wanted to share my experience with DanActive. It is a drinkable yogurt which contains a probiotic. I do not own any stock in the company, FYI. I started drinking DanActive around February, 2007 and have not had a viral infection since then! I think this is a record for me. Knock on wood. It masks the flavor of the giant salt tablet and other of my nasty tasting pills too. Karyn

Sophia, I am glad that you have had some good experiences with the medical profession. Bad experiences make me appreciate the good experiences even more. I start feeling dizzier than usual if I even type a few lines of negative thoughts, or I have a flash of anger for even a few seconds. Morgan, Hi, thanks for mirroring my thoughts. Lthomas (sorry if mispelled), I suspect that most doctors do not feel pulses. They let the nurses take the pulse and just see it as a number. I wish peace and happiness for everyone. We all deserve it, and I personally can never get enough of it! K.

Sophia, I think you might have misunderstood my comment about "simple". It is simple to diagnosis tachycardia by just feeling that the pulse is greater than 100. As some-one else said, it is not simple to state the cause and treatment for the tachycardia. I understand your anger. When I became disabled, unable to work and on bedrest due to POTS during my first pregnancy, I too was blown off. I saw two cardiologists who attributed my dizziness to stress and normal pregnancy. I was a neurology fellow at the time. Even though I am a doctor, I was STILL blown off. During my otherwise excellent neurology training, I NEVER was taught about POTS or neurocardiogenic syncope. When I first asked Dr. Low at Mayo if I had POTS, he said no. HOwever, tilt table testing off meds showed that I definitely have severe POTS. It was years before I got the correct diagnosis. I have more anger over how my fellow, cold, callous doctor colleagues treated me when I could not take call. I can tell that you have a lot of anger. You are entitled. However, I have learned over the years that my anger just ate a hole in MY soul while the jerks kept on ticking happily. At some point, I had to forgive and release my anger. It was just dragging me down. I saw a pt for the first time a few months ago for migraines. About 2 to 4 weeks ago, she first told me about her dizziness. I diagnosed her with POTS based on her TTT. She complained about how long all the tests are taking. I just smiled and said that she has been diagnosed very, very quickly (a month compared to my years!!!) We ARE making progress but I know it is not quick enough. Hopefully we have served as learning cases for the medical community that needed practice?! I wish you peace and happiness K.

I don't think it is so hard to say that someone has tachycardia and low blood volume from simply taking a pulse. I think that it is well known that a weak, difficult to feel pulse can indicate dehydration or low blood volume. It is easy to diagnose tachycardia just by feeling the pulse at more than 100. K.

My mood plummets when POTS flairs. It is depressing when I can do even less than usual and have to just lie around in bed all day. K.

Hi, I don't think you should feel bashful about asking about supplements. I would simply ask "Do you know of any herbal or natural supplements that might be helpful" I am always open to talking about alternative nonprescription medications with my patients. My view is "whatever works". I don't really see that most meds for POTS are a problem longterm. I look at prescription medications differently than you perhaps. I think to myself, "My body is very abnormal without my toprol, midodrine, mestinon, St John's wort, etc, etc. My handfuls of pills that I take everyday help my body to be more NORMAL" I don't like POTS but I do like the pills because they help me fight the POTS. This attitude helps me not to struggle against prescription and nonprescription pills. I suspect that your doctor becomes frustrated if you do not follow instructions because he or she simply really wants to see you improve. If you don't follow the instructions, the doctor feels like you are derailing his or her carefully laid plans to help you. It also wastes time. However, you should never feel forced into taking a medication which is causing sickening side effects. I always want my patients to feel comfortable, informed and involved in the decision to start a new medication or adjust it. It is a partnership. K.

Madeline, I asked Dr. Low that kind of question years ago when I last saw him. I feel dizzy with standing even though my BP drop and HR are controlled ("normalized") on toprol and midodrine. He said that some people still have orthostatic symptoms even though the BP and HR don't actually change upon standing. He said that we do not know why this is so. We assume that there is still decreased brain perfusion upon standing despite normal numbers. There is still much to learn about POTS. Karyn

I agree that there is a biological basis for psychiatric symptoms. I use this information to help my patients consider a medication for the symptoms. Anxiety deserves to be treated, not just pushed off as "all in the head". In addition, some of medications that treat anxiety might also help POTS. K.

Hi Becca, What you said illustrates how many people have problems that we don't even imagine. I thank God that I can work. Although it exhausts me, I see many people who struggle with the same kind of issues as us, just in different forms. It feels good to pass along some coping techniques/attitudes that I have learned the hard way. You are passing along information about your illness which in turn will help those medical professionals to better recognize a patient with your illness. There can be purpose to our illness. Karyn

My brother is a lawyer and I have often told him that he is too nice to be a lawyer! So, I know that there are some good ones in the bunch. I love it when we women can shake up the stereotypes in a traditionally male profession! I lost my job due to POTS too four years ago. I met with a lawyer who said I would have grounds on which to sue them. As others have mentioned, I then thought, "Why do I want to work someplace TOXIC where they do not want me?" Also, why do I want to waste my time, precious energy and money on those dirtbags. As a friend said to me, "When God closes a door, he opens a window". That comforted me. When I was looking for a new position, I had two "headhunters" and looked myself. I had tons of places express no interest whatsoever, and say "no way". I wanted to be completely upfront about my illness so that I would not be surprised by later finding out that they had a bad attitude about my illness. By being upfront, I knew that they accepted my illness before I stepped into my position. They knew upfront exactly what I could not do at the job and appreciated me for what I can do. I found a gem of a position and don't have to hide a thing. I regularly think about how lucky I am. I hope you can brainstorm about what you can do and then find a job to meet that description. K.

Wow, I thought this was just my imagination. I get the same thing, especially when talking on the phone for several minutes. I think it is easier to email than talk with friends over the phone. K.

I love hot baths too. It is the only way to warm my chronically cold hands and feet. The only reason I do not forget my medications is that I have symptoms if I am late by even 30 minutes for any of my dosages. It is a good reminder to take the pills. I always take the majority of my pills in the morning with breakfast. I never skip food so that helps me to remember the breakfast time pills. Karyn