lizababy

Tee,

I have almost gotten to that point in certain positions. I have since found a few ways to combat it going that far. First, I take an extra dose of midodrine beforehand if I am having sex later in the evening. My last dose of midodrine is at 7pm so this usually means that I take it again at 9pm. This doesn't prevent sleep in the slightest. Second, I salt load during the day or drink an extra bottle of gatorade if I anticipate sexual activity (or exercise of any kind for that matter). The extra salt/electrolytes seems to decrease the dizzy spells. Lastly, when beginning to feel even the slightest bit dizzy I change positions or ask my partner to slow down. Even if it is just me blurting out "dizzy!" I make sure that he has a cue to know something has to change in order to help me. Sometimes, this means that there is a cool rag next to the bed in case I (or he, of course) get too hot because this can help me too.

~Elizabeth~

Understand lieze that I am answering in a professional capacity and not personal here. I live in a garden level apt with just a couple of steps so no need for modifications; however, for the last 6 years I have worked for an organization that assists people in getting home modifications for accessibility purposes.

I presume you are talking about a stair ride to help you get from the 1st level to the 2nd?

There will never be a price listed on a website for this. Mostly because the stair ride itself has to be customed to the steps. It will cost more if there are more steps. If there is a curve or a landing then the cost of the stair ride will almost double.

If the stairs are a straight rise, the cost will be anywhere from $3,000 - $6,500 with installation dependant on the length of the steps.

If there is a curve in the stairs, then it can easily be upwards of $10-13K with installation. Please keep in mind that any outstanding electrical issues can potentially raise the cost as well as if the steps have any structural damage.

Acorn Stair Lifts has an excellent website as far as information goes. I believe they will even send out an informational DVD to prospective customers as well.

~Elizabeth~

I picked up a couple boxes, Traci. They say that they are intended for 20 oz of liquid. I put it into a little bit more so it doesn't taste salty and can just add it to plain tap water.

I was in GNC the other day and came across something called gatorlytes. They are more or less a flavorless electrolyte packet from Gatorade that you can add to any beverage. Of course, the packet suggests adding it to your gatorade. Each packet contains the following:

Sodium 780 mg

Potassium 400 mg

Magnesium 10% DV

Calcium 6% DV

They came 20 packets to a box at approximately $15 and a mix and match buy one, get one half off. (Please don't take my price as gospel. This was a Chicagoland GNC and obviously prices will vary.)

I know that most of us, especially in the summer, consume a ton of gatorade, vitaminwater, electrolyte enhanced water, etc, etc, etc just in order to remain functioning or sitting up. I liked that I could throw a little packet in my handbag and not worry about what kind of beverage options are available to me because I can just spice it up no matter where I am. After awhile, I get sick of the same thing all the time and let's face it, it gets expensive :-(

~Elizabeth~

dani, I just reported this same problem to my doctor at my last appointment. I described it more as My arms feel like they are on fire or my flesh feels like it is melting but my body as a whole is cold and I may even be under blankets with the exception of the flesh burning arms.

She did a 3 day glucose monitor and started me on florinef. I go back tomorrow - maybe some answers???

718mom, it is absolutely amazing! I was on 5mg 5x a day of midodrine before the doc added the florinef. I wasn't able to keep my bp up even laying down on just the midodrine when she added it and my headaches were getting out of control. I was popping excedrin migraine every day just to get through work.

So she added a very small dose of florinef (.05 mg). I now take 5mg of midodrine at 6am, 10am, 1 pm, 4, and 7. I take the florinef with my 1pm dose. The headaches have actually gotten better. Today marks two weeks since this change started and I am probably feeling the best I have all year. I am even about to get ready to go to yoga this evening. There is still a certain amount of chest pain but it is not nearly as bad as it was without the florinef. Oh, and I don't drop like a fly when I walk out my door anymore :-)

My first go around with florinef was .1 every other day and the side effects just turned me off from the drug. The swelling was so bad in my gums that my partial would cut through them and cause severe bleeding.

This time around my doc has me doing .05 every day. The lower dose and consistency of it makes me feel like it is my miracle drug. I am almost back to my normal self with a few minor exceptions. Part of me is actually starting to think that the headaches are a little bit better than before when I was just on the midodrine :-)

I was terrified of the same thing! I wouldn't take the midodrine if I wasn't feeling well or wanted to lay down even though the doc wanted me to take it at specific times (waking up, 10am, 1 pm, 4 pm, and 7pm). I started paying attention and realized that it doesn't cause my bp to go high if I lay down. After about a week of taking it at the prescribed times, I wasn't wanting to lay down all the time anyways! I just take it and do whatever I do. If I take a nap, then I take a nap. I actually have an alarm set on my cell phone to go off at the scheduled times so I never forget to take it no matter where I am or what I am doing :-)

Yes, yes, and yes!

For the bloating, I just pop a couple of gas-x. I tend to have some issues with very slow bowels so the gas-x actually works wonders for me. It doesn't speed me up (although the new addition of florinef seems to have) but it does keep the gas at bay.

The chest pain seems to be worse when I have my period or I have stress. I try to keep my stress at a minimum in order to keep the chest pain at a minimum. This has been the best way to go about it for me. Part of it is recognizing what triggers the chest pain. I track my bp a lot and keep logs of what is going on in my life as far as symptom changes.

I thought the sex drive thing was just part of my turning 30 last month! The first couple weeks on a lower dose of midodrine was having the exact opposite effect. (I started at only twice a day 2.5 mg) However, the more midodrine I take it seems as though my sex drive gets higher and higher. I am up to a total of 25mg a day and climbing. This just seems to be a part of life. Understand though, I was expecting the increase not related to the medicine but simply because a woman usually "peaks" in her early 30s. :-)

Florinef was the first thing they tried for me. At .1 every other day, my swelling was so bad that my gums were bleeding and I did not give it a chance.

Fast forward five months, I am on five 5mg tabs of midodrine a day and .05 of florinef for about the last week. I have some mild ankle swelling but this is the first time I have been able to handle the heat enough to even walk out of my house without collapsing. The ankle swelling does get very tender at times but it just means I do less walking and in this weather I cannot complain.

Bren, have you talked to your doctor about the combo midodrine florinef? I won't lie, I still have the headaches but I have no clue which med they come from. Yeah, the neck pain is pretty bad. But I am able to just fight through it all. I try to remember just how bad it is when I cannot even stand and say "Hey, look world! I can stand without passing out today! I am going to do everything I can!" and I just keep on going for as much as I can handle :-)

Congrats!

I am with you. This is the worst heat/humidity (Chicago) we have had in years yet the best I have felt all year long. Doc added a very small dosage of florinef to keep my bp up last Friday. I can finally walk outside my house without collapsing - yeah!!!

Traci~

For the duration, my chest usually feels like it is going to explode. I am not tachy during my period, it just hurts really, really bad

godsgal,

Do you have any gastric issues? My weight fluctuates a lot (up and down) but I find my stomach getting hard and bloated like that a lot. I find that something as little as taking a gas-x makes a huge difference. One of the common problems with dysautonomia is gastric problems (ex. nausea, constipation, bloating, diarrhea, etc.)

It improved greatly when I was on the Midodrine, but now I am back to square one. It is so frustrating!

I have noticed this too, Julie! I have been getting very nauseated, gagging, and vomiting since I have been on midodrine 5x a day. When I cut back on the dosage to only taking it when I was getting out and moving, my energy waned so poorly that I was literally down for a week straight. In that week on my couch, I started back on my strict midodrine schedule. After 8 religious days of taking it 5 x a day, today is the first time I was able to actually wake up before 10 am and make it out of my house. Most days, I could hardly walk to the bathroom and was intentionally putting that off as long as humanly possible! Back to doctor next week I go :-)

Caroline,

When I am in the main forum page, I go to the search bar in the upper right hand corner. It is right underneath where it says your id and has a little picture of you if you uploaded one. Type in whatever topic it is you wish to search for, if you searching the forums, hit enter. It will bring up everything related to the topic with the most recent posts first. If the only information you find is old, I would bring the topic back up just to refresh people's memories. You know how foggy we get :-)

~Elizabeth

Do you mean where your body is cool but it almost feels like your limbs are on fire?

That is what I call it at least. I am not sure if it is isolated to my skin. I just know that I will have my house at a cool 68-70 degrees but my face or arms or legs will feel like they are on fire while the rest of my body is perfectly comfortable, almost cold.

Check out this thread where it was thoroughly discussed:

I hate salt as well. I tend to eat high sodium foods in order to increase my salt intake. I have tried salt tablets but I honestly cannot stand to choke them down too often. When I really need to salt load, I will eat a couple hot dogs for a fast salt jolt but that is the Chicago girl in me :-) I also keep a lot of pre-packaged food on hand for a few reasons. First being that I live alone. This (the dysautonomia) can really wear me down and I can go for weeks at a time when it takes the life out of me just to walk from my couch to the bathroom. Cooking is the last thing I want to do. While I typically do not have much of an appetite, I know that I need to eat. I will intentionally go to the store and buy the frozen single portion meals while looking at the sodium content. I pick out ones that run in the 900-1200 mg range. It can be a big time saver when I am feeling good too!

As far as the Vitamin Water, yes, yes, yes! I try to only drink vitamin water, electrolyte enhanced water (either from Trader Joe's or SmartWater), and Gatorade. When I am feeling good, I can limit it to just regular water but lots of it. I wouldn't limit yourself to 1-2 bottles of Lifewater of Vitamin Water either. That is only 20-40 oz. It is recommended for most people to consume at least 64 oz of liquid/day. As a rule, I double that amount. I drink half in water and half in gatorade or vitamin water.

Check the DINET main page for doctors in your area. It is actually how I found my present doctor when I was struggling for any sort of help.

I took the topamax for just 2 days. The pins and needles have been ongoing and progressive

I was unsure if the pins and needles feelings began with the Topamax or prior.

I, too, get very random pins and needles feelings up and down my hands and feet. They do not believe it is Topamax related as I have been on it for so long that it is unlikely that I would suddenly one day start getting side effects again after 8 years.

I have yet to figure out what causes this and the doctors haven't seemed too concerned about it.

Good Luck!

That pins and needles feeling is a common side effect with Topomax.

When I first started it, I remember having to pull my car over because I would randomly get the feeling up my driving leg or in my hands. It became much more prevalent and occurred more as the dosage increased.

I believe it took around 9 months of being on the medication before the side effects finally wore off.

I started getting migraines in my teens. Every neuro I went to said it was a result of the epilepsy. One eventually put me on Topamax to treat the epilepsy and the migraines magically stopped. Since it controlled the seizures so well, I just dealt with any and all side effects (I have been on Topamax since 2001 and have not had a seizure since 2002 - YEAH!).

That being said... When these problems hit me like a ton of bricks this past winter, the headaches came back. They were so severe that I often could not lift my head. A new neurologist put me on amitryptiline because he believed that the headaches were due to neck pain. I still have them quite frequently but I am not taking 8-10 aleve a day anymore. Now, I can pop 2 a get through the day :-)

I only took it for a few weeks. It caused my gums to swell up so much that they were bleeding excessively from being cut by my partial. This caused me to fear infections and go off of it.

kcmom,

Can I ask how long your son was on this dosage of midodrine before the problem started?

About a week after my doc increased me to 5mg five times/day, I began vomiting, dry heaving and gagging excessively. I initially thought it had something to do with the weather changes due to a lot of rapid plus/minus 20-30 degree changes here. Then I was just feeling so horrible that I wanted to lay around all day so I did not take the midodrine (fear of supine hypertension). The next day I didn't feel sick to my stomach at all! I looked further into midodrine and found the following on drugs.com as rare side effects:

Less frequent adverse reactions were headache; feeling of pressure/fullness in the head; vasodilation/flushing face; confusion/thinking abnormality; dry mouth; nervousness/anxiety and rash. Other adverse reactions that occurred rarely were visual field defect; dizziness; skin hyperesthesia; insomnia; somnolence; erythema multiforme; canker sore; dry skin; dysuria; impaired urination; asthenia; backache; pyrosis; nausea; gastrointestinal distress; flatulence and leg cramps.

Best,

Elizabeth

I am in the same boat as Godsgal right now.

However, if you are having trouble sitting or standing without feeling faint, have you tried resistance bands? If you put a resistance band around your thighs and do leg raises (both with your legs bent and not), this does help with basic core building.

You might also want to consider getting ankle weights and doing some leg lifts while lying down or some small 5 pound weights to lift while lying. Building up muscle in your body will help speed up your metabolism :-)

Julie, I have had migraines for about the last 15 years. They were under control with Topomax (my life saver!) until about four months ago. They became a constant every day battle. My epileptologist(a neuro specializing in epilepsy) put me on amitryptiline to help combat them. This worked wonders.

Then I started the midodrine. They are not nearly what they were before but the doc says that headaches are not uncommon with midodrine. I think it is more of a question of the degree and what you, personally, can tolerate.