Midodrine-skin crawls?

[denabob]

I take Midodrine 1 week out of the month when my octreotide shot looses effect.I take 5mg 3 times a day and my skin feels like it will crawl off. My head is the worst if I touch my face or my hair then I feel like my nerve endings stand on end. Also I freeze when I'm on it. I know these are side effects that normally go away but I dont need it everyday so I dont build a tolerance to it. I wouldn't take it at all but without it I cant function. Any suggestions on what to do or any meds with similar results with less side effects?

[briarrose]

Sorry about your side effects. I tried that medication last fall, I thought it was going to be my lifeline. I had the crawling feeling, especially the scalp for the first day, by the second day I had it from head to toe and then it escalated to extreme itching everywhere. Dr. Grubb's nurse told me to stop taking it and not to try it again.

I take my other meds and just try to deal with the blood pressure swings now. Somedays when I drop below 90, I have to go have IV fluids (if I don't wait for 3 days it helps.)

[denabob]

That's my next request of my DR ,that he give me a standing order for IV fluids. He's 2 1/2 hours away and I dont have much confidence in our local hospital. They dont like when I go and dont let them re-run all my testing. I cant get them to realize I need treated and not re-diagnosed! I feel that it would help alot.Maybe then I could do without the Midodrine.

[Roy]

When I first started out on midodrine I had the scalp crawling sensation for a couple of days. It ended up going away. Midodrine has helped me out alot. If I skip one day I feel awful.

I wish I could a standing order for IV fluids too! I feel so much better after having them.

It would be a real life saver to be able to do it from home.

[futurehope]

What do you all mean by "standing order of IV fluids"? What is in the fluid? Are you in the hospital when they give it to you? How much do you get and how long do the "good" effects last from it? Thanks.

[denabob]

All a standing order means is instead of having to see another Dr I'd already have orders to just go in and get fluids. Yes you are in the hospital but only for as long as it takes for the IV bag to empty- usually a couple hours. It is just a saline solution (pretty much salt/water) that is fed through IV so that it goes directly into the body without drinking it. Quick rehydration! I've had to do it before when I was so nauseas that I couldnt hold down anything so I couldnt get the fluids I need. It leaves you feeling better for as long as you can keep your fluid levels up. I use it as a jump start and then try to drink as much as I can.

I learned this while pregnant- when the body is dehyrating nausea and vomiting usually occurs well it's a catch 22 you throw up so you dehydrate more and because you dehydrate you throw up. The only way to stop is to bring the fluids back up to where they need to be. How much you get depends on how bad you need it.

[futurehope]

Denabob, What test do they do to determine how much fluid you need?

[Jackie]

I'm not sure if my nephew was on Florinef or Midodrine (or are they the same thing by different name?) but he had scalp tingling which he was told was a common side effect.

[MightyMouse]

That skin crawling feeling is completely normal when taking Midodrine (not florinef). I had it every single day that I took the stuff. After a while, it no longer bothered me...in fact, I kind of came to welcome it as a sign that the stuff was working to bring up my bp.

Nina

[goldicedance]

Re: fluids

Here is my take: Dr. Low told me that an infusion of IV fluids is not really the answer. He suggests salt, V-8, cold water, and sitting with your legs propped up. Last June, I had a terrible flare up of POTS and was hospitalized for two weeks. During the first week, my internist put me on IV fluids; the second week, a nephrologist thought I had diabetes insipidus. Moreover, I felt sleep deprived since I got up about 6-8 times per night. A few weeks later, I saw an expert on diabetes insipidus and he told me that IV fluids were a quick fix but your body can only retain so much. Moreover, with POTS, during the day when you are upright your body does its best to retain fluids to help maintain your blood pressure. At night (or when you lay down), you body releases those fluids since your blood pressure is generally higher when you are stretched out. Thus, a vicious cycle. Now wonder we all feel bad@

[denabob]

I dont really know how they determine how much fluid I'm assuming an educated guess.

Goldicedance: That explains why we feel so rotten in the morning as opposed to evening! By the time I would be willing to allow them to put yet another needle in me I'm desperate enough for the "quick fix" just to jump start me until my body can regulate on its own. I'd use it just as a last resort .... I'm pretty sick and tired of being sick and tired ya know what I mean?

Maybe between us all and our many Dr.s we'll figure out how to at least manage our symptoms!

[briarrose]

I?m going to start off with my opinion about IV fluids or you can just skip down to the attachments about Florinef and Midodrine.

It is my feeling and experiences, after having this full blown godforsaken illness for the past 2 ? years (undiagnosed for years before) that when were sick and we do nothing the exacerbation of symptoms for me can last for 4-6 weeks. If my blood pressure drops below 90 or my lowest 60/40, I?m lacking fluids. I can drink plenty of water, Gatorade, etc. but if I?m sick or had an unusually heavy menstrual cycle, I can never get caught up. I need the assistance of intravenous fluids (I?m absolutely sure of this based on plenty of experience.) Why should you torture yourself for multiple weeks, trying to regulate your fluids and electrolytes when there is a simple fix that allows you to get a handle on your situation and only suffer 1-3 days of ****.

Yes, there are doctors that are documented in their personal opinions about whether or not IV fluids are beneficial. Let me restate it?s their personnel opinion. There hasn?t been a study and consider how many variables there would be if they did a study regarding IV fluids and oral fluid intake.

I?ll take our personnel experiences over any doctor?s word on what we SHOULD be feeling. Doctor?s are not gods and they tend to go by word of mouth instead of evidence. Let me remind everyone of you, POTS & Dysautonomia are pretty uncharted territory. The government has not released money to investigate nor provide pharmeucitcals with research money to relieve us of our symptoms. Therefore we rely on drugs that have been produced for other illnesses and are handed to us because their side effects treat our symptoms, i.e. hypotension, ADD, seizures.

However, I think that we can all say that we have our personal opinions and experiences about how doctors have treated us and above all it is our own personal opinions about whether or not they have taken us seriously and aided us in our ongoing suffering with our symptoms/illness.

You be your own judge!

Steph

Midodrine & Florinef ? what?s the difference

Midodrine ? is an antihypotensive/vasopressor.

Midodrine (MI-doe-dreen) is a medicine used to treat low blood pressure (hypotension). It works by stimulating nerve endings in blood vessels, causing the blood vessels to tighten. As a result, blood pressure is increased.

http://www.docguide.com/dg.nsf/PrintPrint/...52566480049B079

Florinef ? Corticosteroids and analogues.

Fludrocortisone ( floo-droe-KOR-tis-sone) is a corticosteroid (kor-ti-koe-STE-roid) (cortisone-like medicine). It belongs to the family of medicines called steroids. Your body naturally produces similar corticosteroids, which are necessary to maintain the balance of certain minerals and water for good health. If your body does not produce enough corticosteroids, your doctor may have prescribed this medicine to help make up the difference.

PHARMACOLOGICAL ACTION

Although the physiological action of fludrocortisone is similar in kind to that of hydrocortisone, its effects, particularly on electrolyte balance, and also on carbohydrate metabolism are considerably heightened and prolonged.

Since fludrocortisone acetate exerts so profound a mineralocorticoid effect, its usefulness is limited to clinical applications which utilize this effect, and it should not be used as an anti-inflammatory agent for the treatment of such cortisone-responsive diseases as rheumatoid arthritis, certain allergies and dermatoses.

Small oral doses of fludrocortisone acetate produce marked sodium retention and increased urinary potassium excretion. Fludrocortisone acetate also causes a rise in blood pressure, apparently because of these effects on electrolyte levels. In larger doses, the steroid inhibits endogenous adrenal cortical secretion, thymic activity, and pituitary corticotrophin secretion; promotes the deposition of liver glycogen; and, unless protein intake is adequate, induces negative nitrogen balance.

The approximate half-life of fludrocortisone is 18 to 36 hours. It is highly protein bound and is eliminated by the kidneys, mostly as inactive metabolites. Duration of action is 1 to 2 days.

WARNINGS

Because of its marked effect on sodium retention, the use of fludrocortisone acetate in the treatment of conditions other than those indicated herein is not advised.

Fludrocortisone increases calcium excretion, which may predispose to osteoporosis or aggravate preexisting osteoporosis.

Fludrocortisone may mask some signs of infection, and new infections may appear during its use. There may be decreased resistance and inability to localize infection when fludrocortisone is used. Chicken pox, measles, herpes zoster, or threadworm infestations, for example, can have a more serious or even fatal course in non-immune children or adults on fludrocortisone.

Patients should not be vaccinated or immunized while on fludrocortisone therapy, especially on high doses, because of a lack of antibody response predisposing to medical complications, particularly neurological ones.

The use of fludrocortisone acetate tablets in patients with active tuberculosis should be restricted to cases on fulminating or disseminated tuberculosis in which fludrocortisone is used for the management of the disease in conjunction with an appropriate antituberculous regimen.

Chemoprophylaxis should be used in patients with latent tuberculosis or tuberculin reactivity who are taking fludrocortisone.

Prolonged use of fludrocortisone may produce posterior subcapsular cataracts or glaucoma, with possible damage to the optic nerve. Prolonged use may also enhance the likelihood of secondary ocular infections.

[goldicedance]

Florinef can also cause excruciating migraine headaches--bad enough for me to be hospoitalized for a week.

Re Fluids--I agree that for exceptional circumstances IV fluids are good. Been there, done that.

Re: Experiences. I have been diagnosed with POTS since 1996 but suffered with it since December 1993. Believe me, those weredays of certainly unchartered territory. I went from doctor to doctor, 3 extensive hospitalizations for low blood pressure, angry cardiologists who got angry when my tachycardia occurred standing up (even in front of a cardiac telemetry room) saying that's impossible--it is nerves; to horrible cardiac ablation of sinus node (with its ensuing complications), unitl 1996 when my doctor discovered a cardiologist at Georgetown who knew something. In fact, I was in the clinical trials for Midodrine. (I kept a few of the trial bottles as souvenirs). Let me tell you, back in 1994-1996, you couldn't find anything on the internet about POTS. At least now, while there is no cure (ugh) although there are good days and bad days, you can know that you are not alone; not crazy, and that there are other people out there who can understand you. I had a small child back in 1994 and let me tell you she was pretty scared when she heard doctors puzzle and worry about my condition outside my hospital room in cardiac care. Not that that doesn't happen now, for sure. But for no one to even have a clue what to do for you. It was only happenstance that my internist (during a day when her office building closed because of a water main break) read a Neurology Journal and discovered Dr. Low's pioneering work and a light bulb went off. At that point, she did further research, and located a doctor at Georgetown. Now, she was and is a pulmonologist so it would not be usual given her hectic schedule, to do extensive reading in the neurology field. Now my Georgetown doctor has left patient practice (given the problems with University and Hospital funding the powers that be decided that he wasn't generating enough money since, as we all know, treating a person with POTS takes more than the amount of time doctors can give us) so I am basically back to my internist who admits she is over her head. It is hard to imagine that in the Washington, D.C. area, there is such a dearth in doctors with an interest in POTS. Oh well, sorry to go off like that...I can tell you I've been through some horrible times. Times when the insurance companies wanted to force me out of the hospital even though I couldn't stand up because of low blood pressure. Moreover, as we all know, our instincts when we are feeeling bad are to lie down, to get out of the misery of lbp, tachy, and possiblly sweating, dizziness. However, I am sure that many of us have also discovered that when we stay flat for a long time, our symptoms only worseen and deteriorate.

Enough of my rant...I know that there are times when symptoms can get really bad--during periods, during sickness. I also know that I push myself way too hard at work. Fortunately, my Employer lets me work at home 3 days a week, which is a big boom (Good luck, Future Hope). I also travel 2-3 time outside the country for business. I can tell you when I get home I am really exhausted. In fact, my husband says that most of my hospitalizations have occurred within a month of when I return to the country.

How we all long for life back to normal. While we may "look normal," we know that inside we are feeling terrible and that our friends and possibly family can't figure out why we don't feel well even though we look ok. How looks can be deceiving.

What I would like to see happen, is for all of us, with all our varied experiences put together a booklet, publish an article, etc. for the "real world"..just get out there with our stories and experiences. We should be active in that regard and get the word out--particularly in areas of our countries and beyond where we can help shed some light. How about for start--an article in like Woman's Day or any of magazines of that ilk which get wide readership so that people who may be suffering from undiagnosed POTS will have something to take to their doctors. We could probably go through old discussion forums and the information is right there. I'm sure many of us wouldn't mind sharing our stories and experiences.

Any thoughts?????

[briarrose]

Great idea about getting our experiences publsihed. I don't mind sharing we just need someone to organize and push the publishers.

Steph

[Jackie]

Four major thoughts.

Florinef sounds like some serious and potentially horrible stuff and I'm glad I didn't try it. I was too afraid and since I already have osteoporosis and was having potassium deficient states at the time I can only wonder why that was thought to be given to me as a first try drug in the first place...hmmm...food for thought I'll have to think to ask the doctor next month.

Secondly, I'd like to investigate the IV fluid thing as a simple outpatient treatment option and will ask the doctor about this too. When I was in the hospital last year for them to figure out "what was wrong with me" which was the biggest joke to date in my life as I was sent home the way I went in, I can say only one thing...the potassium IV fluids they had me on helped tremendously....after they took it away within a few days the tachycardia was worse and by the time I was home...BAM...I was flat on my back again with my heart racing to 140+.

Thirdly, for goodness sakes Goldicedance...I'm humbled enough to shut up about my hard time reading what you have been through. More imortantly though, to travel and everything you must be doing much better now and that is good to know thank goodness...to see how far you have come from where you were at.

Lastly though and finally and totally and most importantly, it is like a lightbulb going off....the writing of a book....how absolutely positively inspiring that is. Would you freak out if I actually got inspired enough to think to take that on, get the ball in motion, and compile our stories for publication...be our voice so to speak? I'm dead on serious here and not being mental. I seriously have always desired to be a writer deep down, but life has a way of leading you in different directions. I've dabbled in personal writing and even went so far into investigating at one time actually how one becomes a published writer...do you HAVE to have a degree and/or contacts to get in...I found out the answers are no you do not...if you can write and have a story to tell and can sell it to the publishing house, well anybody can do it...that is how unknown writers become known writers...not because of who they know but because they can write and they prove themself with what they produce. I've always been positively fascinated by people and their lives. Ask anybody who knows me how many times I've said "I'm going to write a book someday". Now take this a step further and realize as strange as it sounds that this illness to me has been as much a spiritual journey as well as a medical one and I keep coming up with the same conclusion...everything under the sun has a purpose...God has a purpose for all of us and for everything we go through. I have found since my illness and diagnosis that there is nothing more I find worthwhile or satisfying than to have an intimate relationship with God and to serve Him. I pray daily for Him to use me. What qualities do I have?...what did He endow me with?...how can He use me?...my goodness I can hardly clean my house or work, but still...use ME I pray. Well, if there is anything I can do it is write..l can write my butt off as you can see in my long posts that people probably stop reading because I ramble on so...I'm not saying I'm the most qualified or even qualified at all to take this on, but I'm wondering how crazy any of you would think I am if I tried? What if I take this idea and run with it? I have the desire to write and I have the desire for this horrible misunderstood condition to serve some positive purpose in my life. Lately I've pondered often how I can find a deeper purpose in my life, find out what talent if any I possess and how I can use it in service. Maybe this is my answer. I've always wanted to write a book....how crazy would I be? I'm seriousy going to think about this and if everybody is on board to share their stories I think we should do this!!!!! If not me, somebody else....absolutely it is a must!!!! How absolutely inspiring!

[Jackie]

Eeegads! Now after posting it and reading it I realize how crazy I sound. I feel too sick to sit up even right now and I still have to do my typing work for the day. What a nut I am...write a book! I do think it is a wonderful idea I can only dream about and ponder though, but what fun to think about. I think it is imperative we try to get some info. out there though and it is an excellent idea.

[goldicedance]

I think we should start out with articles. I have had experience writing and having the articles published in the journal of the organization I work for.

Does anyone else like this idea? Is anyone willing to start? Any outlines? We need some catchy openings, etc. I think it will work.

I don't want to say that everyday I feel fine. That, frankly, is not the case. Over the past several years, I have had major hospitalizations for POTs and for cardiac problems related to the sinus node ablation I had back in 1996 when no one knew anything about POTS. That would be an experience in itself.

I have had more prescriptions and prescription changes. My insurance probably hates me. But that's life.

I really sympathize for everyone who is feeling badly and poorly. I know how it is and know how easy it is to have bad spells. Like I said, last June was the last really bad period.

While I work, on weekends I am thoroughly exhausted. I basically spend 1 day of my 2 days off in bed. During the week, after dinner, I go to sleep. I would relish the luxury of being able to stay home, put my feet up on the lounge year, and keep my fluids up. I know my quality of life would be better.

[denabob]

I agree totally! Our stories need shared if for nothing else than to "shame" Dr.s into learning more about us! Maybe we could save other people the heartache of years of thinking they're nuts when nobody can find what's wrong!To read the symptoms and stories and think "hey maybe I have pots" could really help. I'm no writer but I wouldn't mind sharing my story and letting someone with the talent and desire clean it up for publication! My Dr is doing a video interview on me in April for Novartis(they manufacture octreotide) to get their attention that POTS is a real disease and this med.does help! He has a real desire to get this illness recognized-he provided me with study articles on it comparing it to more definite disabling conditions such as COPD. We have MORE disabling symptoms than COPD patients. I used the article in my fight against SSDI. I could get more like it if you'd like to use them!

People need to know that our illness is like any other and we CANT stop it-it is a lifelong struggle and NOT all in our heads.

One article actually pointed out that we are usually tougher than most because we are so use to "pushing ourselves" to get through daily activities.We dont give up easy and strive to continue "normal" lives.

[briarrose]

Jackie go for it!

I think we need to come up with content. How much story do we want to give. When it began, what we've been through, medications, treatement, tests, symptoms, daily life, etc.?

Denabob, yes it would be nice to educate doctors. I wonder if we could find some grant money somewhere to help with publishing pamphlets to leave at doctor's offices.

Quality of life is a study they did at Mayo about POTS.

http://www.mayo.edu/proceedings/2002/jun/7706a4.pdf

Steph

[denabob]

My Dr is publishing in a med. journal about this but I think he's more geared to the effects of Octreotide on POTS. I'll ask him about what we would need to do in order to get funding or at least in contact with a company who could help us set it up.His secretary would know alot and she's really nice-we're on first name basis after all the trips I've made!

Hey maybe we could go on a talk show and get some attention-we are at the very least entertaining!

At any rate...I think the publishing idea really needs done and between us all it wouldn't be too much work for one of us!

Our symptoms and tests need mentioned for sure and also the amount of time and frustration due to lack of knowledge by the medical proffession in general.

Also a disclaimer that illnesses such as MS MUST be ruled out first as they carry the same symptoms list. Some of what we went through to get here still has to happen but the Tilt Test needs mentioned.

My Dr is trying to make it obsolete because he says there is no sense it putting an other wise healthy patient through it when a standing test or stairmaster will provide the info they need without drugs. My tilt was very unpleasant -now the standing test still made me ill but all I had to do was stand still hooked to a BP and HR monitor for 20 min.(didn't make it the full time )and within 4 min my HR had already started to spike! The stairmaster is my enemy!!! I went from a HR of 97 resting to 197 in not even 5 min on that thing and got really sick! Stairs dont like me much these days enough of my bio. Keep me posted on our idea!!

[Jackie]

I'm all for articles, books, pamphlets, whatever! I'm sorry I ducked out for a few days but I've had some bad days this weekend and still don't know why I'm feeling so bad again.

Anyway, Goldicedance, articles sound wonderful. I can't think straight today so catchy titles are out of my grasp! Well osteoporosis has "the silent killer" title so maybe "Dysautonomia...the screaming disabler" (just joking honestly..it's a horrid title). When I was thinking about the book issue, I envisioned like an educational section (maybe incorporating some already published articles from specialists with permission) of what it is, etc., and then actual personal stories that people can read and relate to just like on the board (case studies for comparison so to speak).

Julie Tremp a girl I met here on the board runs/ran a support group in my area and I talked to her over the telephone and she mentioned writing to various talk shows and news shows (like 20/20 ?) without success unfortunately. Maybe she will pop in here and enlighten us on how she went about it and such.

I love the idea...I'm just sorry I feel too bad to think about it more right now. Just know I'm on board for whatever we can do and will try to brainstorm if my brain will cooperate in the near future