Help Please - Meds For Fatigue With Pots & Oi (Nmh) & Very Low Blood Pressure

[ChicitaGatita]

Hi All

I'm new to this forum & I'm really grateful to have found it. I am 40 & was diagnosed with neurally mediated hypotension (or orthostatic intolerance when I was 19. At the time I was tired all the time and having near syncope or syncope when I stood up. I was told to take salt tablets.

I've recently discovered I have POTS. My resting HR is 54-60. When I have a shower it goes to 120-134. Just cleaning the house my HR will be around 105-120 depending on what I'm doing.

My normal BP is very low 80-90/60.

The worst symptom I have is fatigue. I can't keep my house clean, some days I struggle to make dinner because I'm so exhausted at the end of the day. I work 2 days a week in a sedentary role but I couldn't work anymore than that.

Can anyone who has very low blood pressure & POTS tell me what medication has been most effective for increasing energy, allowing you to keep being active throughout the day?

[Chaos]

Hi and Welcome. Sorry you are struggling with all this.

Personally, I use both midodrine and a beta blocker. The midodrine helps keep my BP up and the (low dose) beta blocker helps keep my HR down. The midodrine seemed to help my energy a little when I first started it, but fatigue is still a major problem for me. Pacing (as in having a set/limited amount of activity in a day with rest periods built in) is helpful to some degree. Lifestyle modification has become mandatory for me as I simply can't do even 30% of what I used to do. It's been hard to accept but it's gotten to the point where I don't have a choice anymore- my body just won't do it- so I can either accept it or keep being upset about it. Takes too much energy to be upset so I've been working on the accepting it part.

IV saline has also been helpful but then when I feel better, I do too much and feel worse again. Someday maybe I'll learn.

Hope you can find some relief for your symptoms.

[ChicitaGatita]

Thanks Chaos.

I'm not sure what your living situation is. How do u deal with feeling like a burden? My husband works 2 weeks on/2weeks off on an oil rig working 12 hour shifts & doing physically hard work. When he comes home he continues working 6 days out of 7 & 10-12 hours. He also generally comes home to a home that is never tidy & a wife who struggles to make dinner let alone make interesting dinners. We have a 4 year old & I'm a loving, kind, mum but I wish I had more energy so I could do more with her.

[Lethargic Smiles]

Feeling like a burden is a difficult part of chronic illness. Sometimes the emotional parts are even more difficult than the physical. It took me at least a year from the point I became disabled to accept my family does not view me as a burden. To give you some reference, I am 24 years old and live with my fiance and parttime with my stepdaughter. Both of our families help quite a bit due to my illness.

Is anything occuring or being said to make you feel as though you are a burden? If it is mostly you assuming your husband views you as a burden, tell him how you are feeling. You may be surprised by he views it. My fiance just wants me to feel the best I can. He doesn't care if our house is spotless or how elaborate our meals are. He cares if I can do stuff as a family and if I can go to our family functions. He wants me to ask him for help and not make myself sick doing too much. My family (parents and sister especially) want me to ask them to come over and help with laundry, mopping, or the kitchen. I'm still amazed by how much my family doesn't view me as a burden. Love is absolutely astounding.

I have a blog and have written on relationships, children, and chronic illness. I'll include a few links rather than repeat my experiences with still being a good stepmommy and her understanding of my illness. It can be pretty difficult for them to understand someone can get sick and not get better and not die. The best explanation I have found is "I get tired too quickly so I need to rest more than you or Daddy." I do things such as bedtime because I can do that laying down and I treasure our girl talk we have while she drifts off. Here are some fairly POTS friendly activities to do with your child:

https://lethargicsmiles.wordpress.com/2012/11/06/a-3-year-olds-understanding-of-chronic-illness/

The day POTS finally "clicked" for stepdaughter was amazing, it'll happen for you too:

https://lethargicsmiles.wordpress.com/2013/05/05/ageless-understanding/

My top blood pressure number tends to be in the 90s and lower 100s. My resting pulse prior to a beta blocker was around 80 and would go up to 130 while doing things around the house. With Midodrine (raises blood pressure) and Propanolol (beta blocker) my resting, supine post is around 60. Sitting up its around 70-90 depending on if it is a good or bad day. Standing it still gets up to 110. It's kind of difficult in my experience balancing the beta blocker and Midodrine. You don't want the Midodrine to bring up your pulse too much, and you don't want the beta blocker to bring down your blood pressure too much. It really is a balancing act. Midodrine helped quite a bit with my lightheadedness.

[Hope]

Chaos's post could be me, except for the Saline injections. I haven't tried those. I take midodrine and a beta blocker and some days are better than others. But I can't seem to get back to my normal life after 2 years. I have had symptoms since I was a teen, but I've not been disabled until 2 years ago. I am definitely better than I was 2 years ago, but I can't work. I struggle to do things around the house. Even though my alias on here is "HOPE", I find myself getting depressed about my progress. I have to keep doing gratitude checks, because I am very grateful for not being bedridden as I was 2 years ago. It's a rare day when my blood pressure is anywhere near normal. Most days I start out around 78/56 and my heart rate is usually 90 to 120 and goes up quickly and my blood pressure will continue to go south if I don't get my meds in quick. (I should say this goes in waves, because there are some stretches of time that I barely need meds, but my symptoms aren't much improved) Fatigue is my middle name. I've learned from people on here to concentrate on what I can do, and not what I can't. It's hard though. It takes mental discipline to stay focused on the positive, and that can be so difficult when your brain fog is so bad that you can't get 2 brain cells to rub together! At least I can think a little straighter in the evening. I would have great difficulty typing this in the morning. I guess other than my meds, a nap is a MUST! I can't get through any day without a nap. If you find something that works, let us know.

[Lethargic Smiles]

Adderall has helped me a ton with focus and energy. Daily I take 10-15mg, but on a day where I need to with it, I can take up to 40mg. I only do this once every 6 weeks or so. It only helps in the moment.

I had to be really careful to not overdo it. It makes me feel like I have energy, but in all reality, it is fake energy. If I take Adderall, I can get through doing a bunch, but eventually it catches up with me. The post-exertional mailaise is just as bad as it would be if I hadn't taken Adderall the prior day.

I took it at full strength for the final year and a half of college and for 6 months of work. It (along with pain medication and caffeine pills) allowed me to override my body to the point that my body was so worn out, it seized to work. I literally couldn't move or think without pain, vommitting, the works... I think of it that I kept telling my body to quiet down by giving it more drugs to cover up its signals, it finally gave me some signals I couldn't ignore.

So, it helps a lot, but can be dangerous so I don't want anyone to ever think of using it as a cure or way to do whatever they want. For me, it is an invaluable crutch and I don't know what I'd do without it!

[icesktr189]

I am sorry :/ I am 23 and have a 3 year old that I can barely keep up with. Its very hard. I am putting her in pre school on Tuesday, so hopefully that will help a bit. I take midodrine right now. It honestly only helps a bit. It worked a lot better in the beginning, and just kinda burnt out. However, there are a lot of other meds to try!

[margiebee]

I have almost the same exact blood pressure and heart rate generally. I currently am only taking clorazepate, a benzo drug, which lowers my heart rate and doesn't mess too much with my BP but I have to go off of it because of the risk of dependecy.

Lethargic Smiles, I am going to my doctor soon and will start on some actual "POTS meds", and I think those two are actually the ones he had in mind. It is reassuring that they have worked for you, especially the midodrine because I have been somewhat skeptical of that one. Seems like it would make me a jittery mess

[looneymom]

My son takes midodrine but what really helped with fatigue was a protein shake that I purchased at GNC store. It's called Amplified Wheybolic Extreme 60. It comes in different flavors. My son loves the chocolate. I mixed one scoop with one cup of low fat milk. He drank 2-3 shakes per day. This helped get him through the school day.

[Lethargic Smiles]

I just want to say they have helped with the symptoms of low blood pressure (caused light headedness and presyncope and alleviating fatigue slightly) and tachycardia (caused rapid fatigue with standing and presyncope and was just uncomfortable), but I still am disabled. If we had my stepdaughter everyday, it'd be much more difficult. The most difficult symptoms for me are the severe fatigue, ocassional pre-syncope, and I get really bad sore throats after exertion.

[ChicitaGatita]

Thank you so much girls. I've been offline as I've had to stay at a friends house for a few days due to bathroom renos.

Lethargic - thanks for all ur responses & the links to your blog. My husband really doesn't understand my illness. I'm only now getting a diagnosis of POTS confirmed. I think it'll be easier once its confirmed by a cardiologist. Then I'll have a name for what I have & I can explain it. But I'm somewhat anxious in case I don't officially have it (despite my own records of an increase of 50-80 beats increase per minute from resting to standing.

I finally told my husband that I can't keep working (I'm only working 2 days a week). This discussion occurred yesterday & he's been very supportive. I think he finds it very confusing that I can go out & do "fun things" like take our daughter to the park, the library to friends houses, or have play dates with friends & be all cheery with them but then be exhausted & struggle after that's all over. It's hard for him to grasp that it's not an attitude issue.

I'm so glad I'm not going to be working indefinitely because I'm really worn out.

Lethargic - how soon after your symptoms did u get diagnosed? I think one of the reasons I struggle so much (& so does my husband) is that I've been symptomatic for 21 years but until just recently doctors have done what they call "comprehensive" blood work and when nothing shows up they say they can't find anything wrong with me.

[ChicitaGatita]

Ps. I'd like to hear more about everyone's functional limitations.

[Hope]

Functional limitations: I can only drive short distances on very "good" days. Most days I can't drive at all. Today I was feeling very closed in and drove to the mail box about 1/2 mile away and when I got home I climbed into bed for about 2 hours. I can only go down the basement stairs in the afternoon or evening because mornings I'm just too weak and usually I can only do the stairs once or twice in a day. I can't vacuum, or do any scrubbing, I now pay somebody that comes in to do these things for me. I can still load the dishwasher (my son empties if for me). I use a shower chair. I also have a new electric 2-wheel scooter for when I'm having a good day, I can take my son out for a bike ride. Although the last time I was out with him after 2 blocks I became very dizzy and weak and didn't feel real confident I would make it home before I crashed, but I did =) I haven't needed my walker for a while. I use my cane on and off as needed. If I needed to go someplace where I would have to walk any distance I would have to bring my wheel chair, with somebody to drive me to where ever it is I am going. One of my son's does the grocery shopping, I think you get the idea of my limitations. These vary of course. I seem to do better during the winter, actually taking trips to the library with my youngest son, or driving my self to Walgreen's and walking around for 20 minutes before I need to leave etc. But spring seems to bring on more limitations. After 2 years of being diagnosed with POTS, my husband is finally understanding my limitations. It might take your husband a while to adjust.

[ChicitaGatita]

Thanks for sharing Hope. I'm sorry to hear how disabled u are.

I'm able to do about 3-4 hours of activity a day if it involves frequent sitting. For example. I can drive to town (an hour) and walk around for a couple of ours and drive back. But doing more that day is a struggle. If I spend a day at home I can generally get about 3 hours of housework done by breaking it up into 15 minute segments and resting in between. I generally only have one day at home though because I was working 2 days a week and i want my DD4 to have a life so most days I try to take her out and about: library, park, a friends house.

I struggle by the time it hits 4-5pm. Getting dinner done is awful. I'm looking forward to not working as ill have time to step back and create strategies that will help me. For example doing all the prep work for dinner in the morning. Up until now because of working 2 days a week I haven't had the energy to allow me to sit back reflect & create proactive strategies. I've just been desperately putting one foot in front of the other.

[margiebee]

I feel very fortunate to have very few functional limitations compared to other dysautonomia patients, but compared to the general population I still have a lot and it is borderline impossible for people in my life to understand. I work part-time around 15 hours per week and attend school in the fall and spring, but I have to take frequent sitting breaks at work and wear my compression socks, and at school I take the bus from class to class rather than walking. I do get uncomfortable symptoms during these activities from time to time but I just make sure everyone around me is aware of my condition and its never too bad for me. The limitations for me come in more so in what I do with my free time, which is almost 90% sitting or laying doing relaxing non-strenuous activities. I don't go out very much for someone my age, which is something people have trouble understanding. If I hang out with friends they come to my house and sit with me, haha. I don't have severe problems with energy, but I do feel that I "conserve" energy in my free time so that I can still work and attend school which is very important to me. I usually tell people my functional limitations in a nutshell are I can't stand for more than an hour or so at a time, can't walk more than a half mile without sitting and can't run at all, can't be exposed to very hot temperatures and can't lift very heavy objects, all of these trigger symptoms and syncope for me. I also do think that by pushing myself for so long I have made people think that I am "fine" and worn myself a bit too thin.

[Lethargic Smiles]

I'd always gotten worn out easily growing up if I didn't get enough rest. For example, if I did slumber parties two nights in a row, I'd end up sick. It was never anything that kept me from living my life though. I just needed to make sure I always got enough sleep.

In 2008 when I was almost 19 and in my freshman year of college, I got a really bad case of mono. I never recovered. At first my main symptoms were low grade fevers, severe fatigue, and sore throat. As time went on it got worse and worse. The fatigue was the most difficult symptom, but I also began to develop memory issues, trouble focusing, joint pain, and headaches. I went to all kinds of doctors. It's hard to say how severe my symptoms were at this time because of how heavily I covered it up with medication. Eventually I ended up on Adderall to help with my new focus issues and it helped with energy as well. I managed to graduate college in 4 years but it took Adderall, tons of caffeine pills, and not a big social life to do so. I got my dream job creating my own department at an agency at the age of 22. I developed dehabilitating stomach pains. I'd have to work from home some days (thank God thsi was an option) because I could hardly move. Long story short, I became more and more ill. I added Tramadol to my daily combo of medication.

In February of 2012, only weeks after a quit my job and 4 years after the onset, I was diagnosed. When my fiance met me, I was pretty functional because as I said, I was heavily medicated. He went from being able to go out to dinner, movie, and drinks with his fiance, to being excited if his fiance is able to go to a movie with him. He's so understanding and I am so grateful.

My current limiations are severe to the point that the state has found me disabled. Here's a few examples of what I consider big/small things these days...

Huge Things: To do any of these things, I try to ensure I have nothing planned the 2 days prior and 2 days after as I'll need rest.

• take care of my stepdaughter
• go to mall using wheelchair
• go to a movie (the sound gets me)
• have someone over (that I sit up for) for longer than 30 minutes
• go to a family event

Big Things:

• grocery shopping using a motor cart (this is a very big thing for me, it almost made the "huge thing" list)
• housework that takes longer than 7 minutes
• having a guest over
• exercise more than just simple stretching
• a movie in the theater (the sound really gets me)
• research (I like reading/summarazing research journals)
• take a standing shower (versus a bath)
• type a blog post that takes some thought
• prepare a one course meal
• go see a nearby doctor

Small Things:

• take a bath
• shave legs
• do hair
• do makeup
• read a few books to my stepdaughter
• empty the dishwasher or a similar quick task
• type a laid back blog post
• talk on phone <10 minutes
• water the garden
• read an hour or so (I am a much slower reader than I used to be)
• make phone calls to doctor offices
• do the bills
• prepare food <10 minutes (I love my raw blender creations)

Bad Days: I can't do anything, I am happy if I can do one small thing such as looking at things on the computer.

Normal Days: I can either do one big thing, or two to three small things. I can't do big things more than one day in a row unless I want a disaster on my hands.

Good Days: I can either do one big thing and one small thing, or four small things.

On all of these days, I will spend almost all of my day with my feet up and compression hose on. I will have started my day with 1.75 liters of fluid. I will have rested at least an hour, probably more like a few hours, between activities. I will have needed to sleep enough the night before. The activities I listed, are literally it. I never thought I'd count taking a bath as a major part of my day, but that is where I am at. I will not feel good at all during the day and as the day goes on, I will become more and more ill to the point that I can't really get up. I can't think at the end of the day. I try and think and my brain is like "no thanks, I'm good on thinking for today ". What I've listed is what I can do without needing the hospital or without winding up vomitting (my body's final assault).

If you have any specific questions about how tasks effect me, let me know. I'm in a brain foggy week right now, so my writing may not be the clearest. Apologies.