Lethargic Smiles

I just wanted to share my story with you which is, I pushed and pushed for a long time, but eventually my body collapsed and I still haven't gotten back to work. I became sick at 18, during my freshman year of college after a bout of mono. I didn't know it then, but I had EDS predisposing me to POTS. I never thought of the tachycardia as a symptom, so I never mentioned it since the doctors didn't mention it being abnormally high, even resting, so I wasn't diagnosed until I was nearly 23. Prior to that, the diagnosis was CFS and/or psychosomatic which lead me to just keep pushing myself. I remember feeling dizzy, I remember sneaking little blocks of 5 minutes, laying outside lecture halls. It was an actual campus, so I was walking/biking to class. I always had fevers (now they hold off until the evening usually). I relied on caffeine pills and pain medications. I took 18 hours of classes, was a teaching assistant, volunteered and trained others on a crisis hotline, worked 10-15 hours a week, and interned. That is so much, but I really felt nothing should hold me back since "nothing was wrong with me". One doctor always told me to do less, rest more, maybe take a semester off, but I refused. I graduated and got a dream job that was accommodating with my mysterious illness. I loved my job, and I worked so hard to not let my illness take it away from me. On my lunch breaks, I just laid on my office floor with the lights out. My employers were okay with it when I had to go down from 40 to 30 hours. They were okay with my doing several work hours from in the comfort in my bed. However, eventually I just collapsed and it was clear I had to quit. My body was forcing me to take care of myself. In the same week, a doctor finally asked about my tachycardia, I remembered by sister had POTS as a teenager, and we got me diagnosed. The lymph node swelling and fever are both still a mystery. A few months after my total collapse, I was hospitalized for a week and I've been working my way out of that whole for a year and a half now. I've come far and put the effort I put into work into figuring out answers for myself, but I always think, maybe if I had done a little less pushing, I wouldn't have driven myself into such a health crisis. Maybe I could have cruised along. My point: People act like "pushing" is always a good thing. I think sometimes it is, but you need to know yourself. Are you someone who is always pushing yourself and, if you push yourself harder, you'll wind up like me? Or are you someone who tends to err on the side of caution, and could use a shove? Everyone is different so just be sure not to be harsh on yourself. I finally have given in and applied for social security disability with the intent to go all the way to court if needed. I applied shortly after quitting my job, but when they denied me, decided I'd just get better instead of bothering with them. Now, a year later, I realize I need to get the ball rolling. I have a lawyer doing all the work for me. I didn't like the idea of a lawyer at first because they get such a large chunk of the back pay, but then I realized 75% of something is more than 100% of nothing.

I'm ending my first week of 30mg twice a day. Tomorrow I will go up to 30mg 3x/daily. Basically, the improvement I've noted is my blood pressure doesn't decrease when I stand and I don't require as much Midodrine. I don't notice much of a difference in terms of my quality of life, but here is what I have noticed: At this dosage, I can take it on an empty stomach. Although I have trouble with nausea/vomiting and food intolerances, I've never been someone who has a sensitive stomach. I may feel a bit more "able" when I have my little bursts of energy throughout the day (usually 10-20 minutes twice a day), but I wouldn't say the energy bursts are more frequent or the consequences (post-exertion malaise) have changed.I experience no increase in GI motility at this dose.Although I'm not more tired during the day, I've been easily sleeping 10.5 hours at night if I'm not woken up and I could still sleep more. January 30, my grandpa who I am close with passed away, so that could be playing into things as well. Usually, I sleep right around 9-9.5 hours and only sleep 10 hours if I have a virus or didn't get enough sleep the prior few nights.My Midodrine and Propanolol dosing has been reduced by 25% without resulting in any changes in vitals.My blood pressure increases when I stand which has never been the case in the last few years. I'd need to take Midodrine so that when I stood, the drop wasn't significant enough to cause hypotension.Today, after my bath, my legs felt like Jello for an hour! I could walk, but it felt like my legs my just melt beneath me at any moment. This may not be unusual for some dysautonomiacs, but for me it is!I have familial POTS, hyperadrenergic POTS, orthostatic hypotension, and EDS-3. The familial POTS is likely just the fact EDS is genetic and predisposes people to POTS.

That's a bummer about it no longer working on your fatigue when at first it did. You had to have felt really hopeful to have found some relief. I've noticed a similar thing with Adderall. It used to make me very energetic, now it just keeps me normal.. however I have to consider I am more ill than when I first start taking it, and I have more energy than I did when a year ago at my worst.

Thanks for the responses. I'm in the beginning stages so I am at 30 mg times twice a day and we will increase weekly from here. Day one has brought no side effects at all which is a relief after my bad experience trying Clonidine. My resting blood pressure today is 95-105/65-70 and standing is 115/84, so it is doing what it should with my blood pressure. My resting pulse was 81. I took it after walking to the bathroom and back to my chair, and it was 106. So not as high as usual but I also didn't stand in one spot prior to taking it. Still, a good sign. Energy is about the same as is focus. I take Midodrine and Propanolol, but dose based onhow I feel and my stats. I usually take 5-7.5 mg of Midodrine twice a day, but I've only taken 2.5 mg this morning and 5mg this afternoon. I took half the usual beta blocker this morning and the full amount in the afternoon (Propanolol: typical dose 10mg 2-3x daily). I hope I can get off Propanolol, I hate the fatigue it gives me!

Thanks for the responses Janet and Corina. For people who take it twice a day, how far apart do you space your doses?

Has insomnia been an issue for anyone with Mestinon?

The Mestinon is waiting for my fiance to pick it up at the pharmacy! It took over three months, but I finally will get to try it. I will share my results with you-- maybe make a Mestinon journal thread? I always thought it'd be neat if there were threads for different medications and people wrote their experience, first day by day, then week by week. Thanks for the warning gjensen, I will proceed cautiously.

Thanks for your input everyone. It's been a year and a half of making progress with the bike, having a setback, starting all over again.. maybe I will give walking a shot.

So, the conventional POTS wisdom I've always heard from specialists (and other patients) is to start out on a recumbent bike and work up to upright exercise, the reason being is the more supine the patient is, the less symptomatic s/he will become during exercise and the less stress on the body. I'd like your thoughts on this suggestion I've been given... I recently saw an EDS specialist. He makes no claims to be a POTS specialist, however he does encounter lots of POTS patients, was up in the latest research, and sees many patients who have various issues with exercise. I was surprised when he suggested (in addition to physical therapy for EDS issues) perhaps the bike is too difficult right now and I should start with walking. Upon his request for me to elaborate when I said that was different than what I had been told before, I explained the conventional wisdom of the recumbent bike. I wasn't challenging him, I just wanted to understand his recommendation, He still stood by his original recommendation saying 5 minutes of walking is easier on the body than 5 minutes of recumbent biking. He stated the body will pump blood back up if it is moving, although not like it should at first. He also talked about counter maneuvers and such, so I know he understands blood pooling. I have thought about this quite a bit. On a really good day, I can walk around a store (sort of leaning on the cart) for about ten minutes, usually with spells of dizziness throughout, before I need to squat, sit, or lay. If on a similar sort of day, instead of going to a store, I decided to do my bike, I'd struggle to do 6 minutes on resistance level 1 out of 8. I think the bike is probably less stressful overall in my body and may build more muscle than walking which is important for blood pooling. Still, what's a more natural exercise than walking? It has been drilled into my head to exercise with my body as parallel to the floor as possible. The thought that walking may be a better option because I can get in more exercise time and recumbent biking is more difficult than walking is new to me. I thought I'd just see what everyone here thinks about this and/or has experienced.

This is exciting! I remember the first time I read about it a year ago, I thought, "Oh my goodness, this drug sounds perfect for my case -- why haven't we tried this?! I must email my doctor at once!" ... only to find out it isn't available here.

Becia thanks for sharing! It sounds like you made a tough decision to stay with your friends rather than go back to living with family and are much better off for it. I'm happy to hear you have a supportive living environment, but sorry to hear it has cut you off from your family and you are thought of as selfish. In my opinion, they are behaving selfishly for thinking of you as being selfish. Whenever I feel like I'm being selfish, I always ask myself, "If so-and-so had the flu, would expect her to do this?" We get so used to being sick, I think it is easy lose perspective... at least I do. It sounds like these friends of yours are what I think of when I hear the word family. Hopefully more people chime in... Hint hint.

I went to an geneticist (Dr Tinkle) who focuses on connective tissue disorders a week and a half ago. He diagnosed me with EDS 3. While he doesn't diagnose POTS, he sees it quite often since his main focus is EDS. Guess what he said? The next drug that would make sense to try would be MESTINON! You know how he knew this? He reads journal articles on EDS and dysautonomia and the like. He cited Dr. Grubb's research without me needing to whip out my journal article. **sigh of relief** He said he could refer me to a neurologist or cardiologist who deal with POTS if I'd prefer, but that otherwise, he'd be fine with prescribing it. I said I'd be fine with him prescribing it, because at this point, I really don't know what a POTS specialist would have to offer me since I've had all of the Mayo testing done.... I will update here to let you know how I respond to Mestinon. With the big fuss I've put up over it, I'm guessing I will have some sort of horrid reaction. Ha!

Does anyone have experiences to share with me about changing living situations due to chronic illness? Maybe it was a choice, or maybe you had no choice, either way, I'd love to hear about things about it such as the situation, how you made the choice, doubts you had going in, the positives/negatives, if you'd make the same decision again, what you'd do differently or wish you knew before... Really anything you care to share! If you were sick before moving (or having someone move in), and the change was to try and focus more on your health: What did you miss about your old living arrangements, what did you not miss?

My guess is the steroid shot is causing your current issues. It can cause side effects in otherwise healthy patients, so I'd imagine we are even more susceptible. It could also be that your HPA axis has been temporarily thrown off from the steroid and hasn't kicked back in properly yet.

I heat up 1-2 bullion cubes into a pint of water to get my sodium. For awhile, I did Campbell's tomato juice which is quite high in sodium, just dangerous to consume daily on an empty stomach due to how acidic tomato is. It gave me gastritis, so if you go that route, I recommend drinking it with food! Personally, if I drink with meals my gastroparesis gets angry. Just an FYI, salt is 40% sodium. 10 grams of salt provides about 6 grams of sodium. For the longest time, I thought 10 grams of salt = 10 grams of sodium.

Yes, mine are painful. It gets to the point where I wear my fiance's shirts so nothing presses on my armpits. Activity makes mine worse.

Do they hurt and what tends to trigger the swelling?

Research blue light and the effect it has on sleep. I switched to an orange lightbulb in the lamp next to my bed. Really any research you can do on the pineal gland is pretty interesting as it relates to our sleep/wake cycles. Melatonin and valerian root can be helpful, but for some, effect blood pressure, so watch that. Make sure you have everything you need when you go to bed so you don't have to keep standing up and making your POTS angry.

I still have my parents insurance, but I successfully got Medicaid by being declared disabled by the state for having POTS. I had to appeal, but from the time I applied to the time I was approved was less than a year. I live in Illinois. Also, just a tip: you can say you are too ill to come into the office and need to do interviews over the phone.

I had my appointment with Dr. Tinkle today. He was very attentive and, between my Mom and I (joint appointment), we were there about 3-3.5 hours. About 75% of that time, was spent with him. A little bit was spent with a genetic counselor gathering background information. He is willing to help with POTS, but offered two specialists. I said, at this point, I don't feel there's much left to learn about my POTS, so I am fine with him managing my medications through my GP! He is willing to try me out on Mestinon which I've been wanting to try. He is going to take some time to sit with my medication list and think of what order he wants to do tweaking in. I will know the game plan by the end of the month. I officially have been diagnosed with EDS 3. We are going to do some physical therapy and some retraining for how I move/position myself and the like... He had no guesses on my lymph node issues (chronic swelling of throat/armpit) or fevers. Family members of mine get swollen joints and fevers. He was uninterested, just no clue on what would be going on there other than it is obviously some sort of autoimmune issue. I sort of liked that he didn't speculate about things he has no clue about and just stuck to what he is an expert at. Also, he was really helpful to my Mom who has all sorts of joint issues and had POTS in her 20s (not diagnosed back then in the 70s).

Biofeedback definitely isn't a treatment (for most), it's more of a lifestyle modification tool that can make life a little less miserable and give the patient back a bit of control.

It is not true for everyone, but for most people, hands and feet tend to be colder when circulation is out of whack. You attach the hand thermometer to your finger or toe and practice diaphragmatic breathing. This relaxes the body through allowing it to be more in parasympathetic mode than sympathetic mode most dysautonomiacs tend to be stuck in. As you relax, circulation improves, more blood gets to extremities such as hands and feet, and, as a result, the temperature will go up. The visual aid of the thermometer serves as reinforcement that you are indeed accomplishing something. The idea is, eventually, you'll be able to improve circulation with breathing techniques anywhere and without the aid of a thermometer. After 5 months of twice daily practice, I find I have more control over my circulation in most situations, but there are some situations where my body is too out of whack for diaphragmatic breathing to be helpful. That said, it is helpful a large percentage of the time. When I first started practicing it, after an hour or so of training in the office, my nose/face felt tingly and numb. I asked what was going on and the doctor explained my body is probably not used to blood getting around properly. This effect went away within a few days.

Thanks for the tips everyone! It confirms the gist I've been getting which is geneticists in general tend to be much more thourough than other doctors. That's what I need. Looney Mom-- I think it was a perfect storm. I have a predisposition to POTS (my sister had it) and dysautonomia (Mom & Grandma), and was doing fine, then I got mono and it triggered it. My immunologist hasn't been able to help (not for lack of trying -- she's the one who found POTS) because my EBV levels in my DNA are normal. My lymph nodes swell all of the time and the like. Hoping January 6th brings me some answers!

That is insane! I don't know how I'd feel about continuing with a doctor who put me through all of that.

Great news -- a geneticist who is very well versed in EDS (Dr Tinkle now near Chicago, used to be located in Cincinnati) agreed to get me in January 6 after being on a wait list for quite some time. After waiting for awhile, we wrote a letter explaining my situation and basically begging for help, and within a week or two, he had his nurse/scheduler get me in as soon as they could. From what I understand, although he doesn't treat it, he will be pretty familiar with dysautonomia. My Mom will have an appointment first, then me. My sister won't have an appointment, but is coming to answer questions for me as she had POTS for about a decade. Both of them will be a big help for providing information on family history which I hear geneticists go pretty in depth on. I was just hoping others who have been to a geneticist could share their experience (the good and the bad) with geneticists. Do you have any questions I should be sure to ask? Is there anything you wish you had known? Are the any tests I should be sure to get or questions to ask? My POTS is genetic, but seems to have an autoimmune root (other family members have autoimmune issues) and was triggered by mono.