lizababy

misstraci - I have no idea why only my systolic has been increasing! My dr also indicated that my heart rate would decrease when using midodrine. HAHA! That has not been the case. It has actually been getting higher lately while my blood pressure has been tolerable. I do recommend monitoring your blood pressure when first starting midodrine. I am a little compulsive about it as I wanted to have a good feel for what exactly it was doing to my body. Also, because incorrect dosing can cause hypertension I wanted to ensure that my bp did not go from one extreme to another. ETA: It isn't uncommon that you wouldn't have felt any effects from the Cymbalta after only 3 1/2 weeks. About 8 months before my NCS became life impeding, I weaned off of Cymbalta after having been on it for the previous 2 years for generalized muscular pain following a spinal fusion. Knowing what I know now, I wonder if the Cymbalta simply kept my body in check and by going off of it allowed symptoms to become more pronounced.

I had gone to primaries and my neurologist all of which were less than helpful. They were only able to indicate that I had a problem with my blood pressure but everything else was all in my head or I was making it up. When the primary doctor tried me on Florinef, I started researching the drug and came across POTS then DINET. The only doctor that treats any forms of dysautonomia in Chicago according to the website is an endocrinologist. I made an appointment. :-) She did testing on my heart and all of my hormones that had not been previously tested. She checked for any possible adrenal problems (thyroid had already been checked out) before she would commit to treating in any possible way. Personally, I have no hormonal deficiencies. My adrenaline is on the high side but not something that raised a concern. I would have never thought to go to an endocrinologist. My primary was at a loss as to even what type of specialist to send me so I sent myself. It has been worth it.

I have been taking 5 mg, 5 times a day. Upon waking, 10am, 1pm, 4pm and at 7. However, I am with Julie. It increases my Systolic pressure but the diastolic remains in the 50s. On the midodrine, my BP readings come in around 100/50 sitting. The benefits? I am able to get through the day without problems of dizziness. I can go to work, run errands, hang out with friends and basically feel like a normal, single 30 year old female for the most part. The downside? The intense migraines that I take amitryptiline for have come back with a vengeance since I started midodrine. The only thing that hasn't happened is the severe neck pain. If you already have headaches, I would be very careful. I have severe, severe dry mouth. Most days consist of me drinking about 4.5L of water and sucking half a bag of Halls Breezers just to keep from drinking another couple liters of water. Of course, there is the head fullness and itching. I get goosebumps all over as well and random chills when it is not cold at all. All in all, it is a very effective medicine for my hypotension but it is not without its flaws. I typically have to give it a good 45 minutes to kick in. I am curious though, why did the doctor take you off of Cymbalta?

Standfirm, I do drink A LOT of electrolyte water. I actually prefer it over the gatorade. Gatorade seems to make me feel worse (my guess if the sweetness). Instead of peppermints, I pop a Halls Breezer. These are just pectin drops. Normally, I just suck on them to combat dry mouth because otherwise I am drinking more than 5L of water a day. It has gotten to the point where the only time I am not gagging or dry heaving is when I am sucking on a Breezer. I am no longer convinced that this is related to the heat though. Yesterday, it barely reached 70 degrees here and I was sick all day long. @dani, I have thought about the same thing! The crazy wild changes in the midwest drive my body crazy. I may just be time to move to the place where it only goes above 78 an average of 28 days/year :-)

My neuro gave me ambien for the bouts with insomnia. I would need to take 20 mg in order for anything to happen at all. Otherwise, I would be up for 72 hours plus. It was awful. Now, I take amitryptiline (sp?) at 10 mg a night. Before I started the midodrine, it helped with the headaches and incessant neck pain but it also helps me sleep a lot. I am usually out within 3 hours of taking it.

I have actually noticed that besides the incessant vomiting, I do better in the heat than cold. Sudden heat brings on a crushing feeling in my chest, tachycardia and I can't breathe. But when it is just hot out, I am ok. I always hated running the A/C in my house or car (it always gave me headaches). Part of me thinks that this may in the long run be helping me right now. But when I walk into a cold building and then step onto a different floor that is 20 degrees warmer, I react very poorly. This is the standard for my office building so I have purchased a portable unit for my cubicle.

The rheumatologist I saw for it described it as a general misfire in your nerves. Your nerves tell you there is pain that is not truly there so although you feel generalized pain, there is nothing physically wrong with the joints or muscle groups that hurt. This is why they usually treat it best with anti-depressants or anti-convulsants. My main problems were in my knees, hips and back. I took lyrica and then cymbalta for quite some time medicinally. I also wore these crazy shoes called Z-Coils that helped a lot when the meds didn't do the trick. I became functional again and was able to get off of all the fibro meds.

I know that the heat naturally is not our friend. However, my body is reacting a little strangely to this most recent rapid temperature increase. In the morning as it gets hotter and my body can't adjust, I spend the first 3-4 hours nauseous and throwing up. When I cool off, it stops. Anytime my body starts to get too hot, I am gagging and dry heaving. My doctor has advised me to take pepcid in the morning and night; however, it has yet to bring any relief. She indicated that if this doesn't stop then there is more testing to come - yeah! Has anyone else experienced this type of reaction to the weather? Or have experience with what in the world is going on here? Needless to say, I am at the forcing myself to eat point because it is that uncomfortable. Thanks in advance, Elizabeth

I see an Endocrinologist. However, it took me at least six doctors in a manner of three months to find her and going outside of the research hospital/network I normally go to. I had gone to two neurologists, four internists, a gastroenterologist (due to what my nurse aunt suspected was an obstruction) and three trips to the ER from such severe pain.

Having tried both, I would go with Midodrine. It has a very short half life but, given that it works for you, the effects on your blood pressure are noticeable within the first hour or so. Florinef take some time to get into your system and raise your blood pressure. Mine would continue to plummet even on the Florinef 12 hrs after taking it. The side effects of Midodrine are a tad annoying (goosebumps, tingly scalp, sudden chills, rampant thirst) but, in my opinion, they are far better than the swelling that Florinef causes. I was a swollen mess on Florinef. The swelling was so extreme that my gums were bleeding. Granted, this is not the case for everyone. Midodrine has not caused me nearly the problems and has me functioning, most of the time.

What is really confusing to me (most of it I am trying to make a correlation and figure out what is going on with my body) are these extreme shifts from hot to cold to hot back to cold. I have been in the Chicago area my entire life so naturally I am used to the crazy weather. These last few weeks we have been warm/hot for three days then it shifts down to low 50s for a few days and shifts back to hot again. With each shift to the cold, I find myself unable to do much more than sleep and unable to keep my BP up. I am not sure if it has to do with the weather change or the moments when I am unable to get my body warm. I am barely recovered before the weather is shifting AGAIN! Is this a common problem with extreme shifts in the weather no matter what way the tide is turning?

Although I have experienced many symptoms throughout most of my life, I did not crash and burn until this last January. I suddenly became unable to keep my BP up long enough to walk across the room (along with a myriad of other problems); however, the inability to keep my BP up caused me to take a leave of absence from work/school. Thanks to my own advocacy, I was able to find a doctor willing to work with me after four months of "Drink more water!". At my last appointment, she warned me that the heat would cause me to crash. We had experienced a very random couple of 90 degree days the week before. I had been concerned because although the Midodrin typically keeps my BP up, it was not able to on those days. I know now to expect this. I am in the trial and error phase of dysautonomia and feeling a little desperate right now. Is there any correlation with extreme shifts from hot to cold? Or even when it feels like you cannot keep your body warm? Is it more related to humidity than hot/cold? Thank you all in advance for your input! ~Elizabeth~

Jenny, I use DevaCurl no-Poo and One Condition. While these are both organic and natural, they do have a fragrance (and are intended for the curly girl). Deva does have a line called DevaCare that is not solely for curly hair but also marketed towards chemically treated hair. Best, Elizabeth

My mom used to rinse my hair with vinegar/water when I was a kid to get rid of build up. The smell of that always made me very dizzy and nauseous. Have you tried any phospate/sulfate free shampoos? They are typically quite natural and have little reaction as far as allergies. I use a phosphate/sulfate free poo but only because it helps with the care of curly, frizzy hair :-) Do you have any spine abnormalities? I ask this because I have very mild scoliosis where my neck hits my shoulders. I have always compensated for it so my neck is naturally strained. That being said, bending forward and/or hanging my head for any length of time causes me great distress. It is usually even uncomfortable for me to have my hair washed at the Salon (and again distressing). I experience the types of symptoms that you speak of; however, I always attributed it to a level of discomfort and pain. Best, Elizabeth

I haven't gone the tablet route yet. Instead, I have been eating foods that are listed as high sodium. I found a fantastic list that I printed and keep on my fridge. While it says "High Sodium Food to Avoid", I simply read it as "Food I should be eating"! http://www.meniett.com/dietary_treatment_high_sodium.html Also, since I live alone I end up eating a lot of frozen meals or take out. I often lack the energy to cook. In efforts to increase sodium intake, I decided to steer clear of the healthier foods I was eating and look at the nutritional contents of frozen meals. I buy ones with higher sodium content. I also keep a can of Pringles to eat a couple when a salt surge is needed. I don't know how much this helps but the Pringles taste good so I feel like I am doing something right there.

I feel your pain right now, Naomi. This is my first spring to summer transition and it is not fun. Chicago weather is crazy as it is but Chicago weather combined with this is AWFUL! It got into the high 70s - low 80s over the weekend here. I went into the office on Monday morning and it was probably 60 degrees out. The moment I stepped onto our floor, I could hardly breathe and felt like my chest was going to explode! It was 80 degrees in the office according to the thermometer! I drank about 2 Liters of water and tried to cool down but the most I could handle was a couple hours. It just kept getting worse - dizziness, tachy and my bp dropped crazy low. Fortunately, I have a very understanding boss but this is going to be a lot tougher than I imagined. Stay cool! I have been running my A/C if it gets over 74 out and it helps a lot. I try to run my errands at night when it cools down (or early morning before it gets too warm). Obviously, we cannot control the outside but we can control the inside environment and that does seem to help wonders. ~Elizabeth~

Jared, I have not tried it. I withdrew from classes the semester I should have graduated when symptoms became unbearable. If I can stick it out, I will finish in December (fingers crossed, fingers crossed) as I only have 17 credit hours remaining. I would look at deferring your loans first. Since your only income is SSDI, you would fall under the economic hardship category. I don't know about you but I would not want to say that you will never get better or even have a doctor commit to that. Especially at your age. Best, Elizabeth

Jared, You can have federal student loans discharged due to disability. Please look into this! http://www.disabilitydischarge.com/Pages/General.aspx This can save you a lot of heartache in the long run!

Lieze, Try sunbutter. It is like a nut butter but made from sunflower seeds. It is peanut-free, tree-nut free and gluten-free but still packs the protein and fat to help you.

The search for high sodium foods is pretty much a bust. Irony of ironies, most high sodium foods I have been advised to steer clear of due to the connections to migraines (processed meats, MSG, cheese, etc). I will have to check Walgreens. If I cannot find the Thermotabs there, I will simply order from amazon. Will the Thermotabs have me drinking even more water? Thanks so much!

I love coconut water. I haven't had any lately but I do know that during WWII it was used for dehydrated, wounded soldiers on the battlefield. Based on this, I would imagine it to be an excellent substitute for gatorade. Personally, I have been substituting Trader Joe's Electrolyte Enhanced Water for my gatorade. Basically, TJ's brand of smartWater. Probably not as good as C-Water but definitely yummy!

My bp first went wonky this last winter (i had a litany of problems before this year). While I am on Midodrine, I learned through a freak heat wave last week that my body does not respond to heat well. My doctor recommended salt loading and extra fluids when it gets warm. How do I go about salt loading? When I was searching for an answer for months, I drank tons of gatorade. But I hate salt and salty foods. I searched the local vitamin store but nowhere had salt tablets. Should I just be drinking salt water? Thanks to all in advance! Cheers, Elizabeth

I wanted to share with all of you a program that is an offshoot of the organization I work for (and, yes it is nationwide). Infinitec DME is a Durable Medical Equipment exchange program. You can search available equipment for lending through the website, donate used/unused medical equipment and borrow needed medical equipment for indefinite periods of time. This is a fantastic program for anyone who is in need of the medical equipment (from shower chairs to walkers to even hospital beds) and is unable to either afford it or have it covered by insurance.

It has gotten better. My body has just become more tolerant. I won't lie and say the first day was a walk in the park. My doc told me we were going to start it but we couldn't until the next week when she had office hours again as they wanted to monitor my response. She started me on a 2.5 mg dose (in her office) and it took me 2 minutes of standing before the rapid bp drop to start. Yes, I am still insanely cold a lot and have the funny tingles in my scalp and goosebumps. I drink a ton more water than I was before. However, the reality is that in the last weeks on it I have been able to resume a semi-normal life that had come to a crashing halt one day. I am working more, going out with friends again and seeing my family. I will take the crazy goosebumps and insane thirst if it means I am not locked in my house all the time Sometimes, the good of the meds outweigh the side effects. It just takes the body a little time to adjust to it.

Mine does this too alot, Jana! My doctor has new residents every month. I learned from last month's resident that a hallmark sign of OH is a "choppy pulse." They have a hard time feeling your pulse as though it is going in and out all of the time? My guess is that it has to do with low blood flow (please do not quote me). However, I know that it does cause my monitor to error out a lot when standing. I have even had nurse's unable to do a manual reading of my bp :-)