Medication = no symptoms at all?

[vbc2000]

Hi my forum friends :)
Well I've been able to take the Midodrine (10mg at a time) for the past two days without dizziness and had a good test for it today.  I took it at 1pm and about an hour to an hour and a half later, I was dress shopping for a wedding.  Shopping for any length of time always brings on pre-syncope symptoms.  I guess it's the standing up.  Anyway, unfortunately I had the symptoms again today while on the Midodrine :(  I'm not ready to give up on it but I need to know if I'm being realistic.

Do any of you find your symptoms, especially pre-syncope symptoms, completely gone after finding the right medication?  I don't know if I should keep chasing that outcome because I don't know if that's a realistic expectation to have?  

Thanks in advance...hope you all have a good weekend.  I'm in for a marathon day tomorrow.  My husband's step-father died and we have the wake from 2:30-7!  I'm not anticipating being well enough to go back to the house for a meal afterwards and I'm really worried about how I'm gonna do tomorrow when I have to be there.  I think I'm going to go in a seperate car than my husband so at least I have the option to leave if I have to.  His family only knows about my hypoglycemia and I'm sure they think I'm a flake because I don't come to all the family functions from not feeling well.  Wish me luck!
Stephanie

[vbc2000]

Hi Heiferly,

I'm so sorry you have SO much going on.  It must be mind-numbing sometimes!  You have a great sense of humor and I'm sure that helps :)  Now that I read that you have narcolepsy on top of everything else, I understand why you fall out of chairs all the time!  Have you been awarded SS disability?  It would seem you more than qualify so I hope so.  I work with an administrator who has the funds to fight for 16 years and he just got it awarded to him for a back injury.  I'm surprised they didn't deny him because he was working 16 years with his back injury!  I do understand people try to bilk the system, but it's a shame people who really do need it, can't get it without too much trouble.  We hardly have the energy to live, let alone fight them!  I have a really hard time working and don't think I could ever get it but I might have to look into it if I get any worse and/or don't find a good treatment.  I work in Civil Service so we do get good sick time and holiday time so I've been able to hold it together...that and my husband drives us both to and from or I wouldn't be able to do it.

"As for my other meds, we still make adjustments here and there ... probably moreso because my symptoms change over time than because of anything else."  A new wrinkle to add to everything else!  Our bodies do keep changing and once you find something, it doesn't mean it's going to work forever...oh joy!

I'll be looking for your post.  I'm so glad you have docs that take you seriously and are helping as much as they are :)  Thanks for writing.
Stephanie

[vbc2000]

Hi Marinella
I'm so glad the Midodrine is working so well for you now after a rocky start.  I really am happy for you and it gives me hope for myself so thank you for writing.  I've been having muscle spasms too!  Didn't know that was a side effect.  I was SO tired on the beta blocker and am just feeling better from that, so I don't know about the fatigue yet.  I have had a headache, head/scalp numbness and itchy skin, but nothing too awful yet.

I believe you and your Neurologist about needing a month for your system to get used to the Midodrine, but I thought maybe that wasn't the case since it left your system so quickly and was so quick acting.  I don't know why I thought that but if anyone else has any input about this, I'd love to hear it.  If I don't, I'm going to chalk it up to temporary AD brain freeze on my part and take your word for it.  In that case, I need to re-schedule my Monday appt. since I've only really been on if for a week!  Thanks again,
Stephanie

[Heiferly]

I haven't stopped tweaking things yet, I just know the goal for me isn't "no symptoms."  My personal goal is just to have the best quality of life I can possibly finagle out of things.  :-)

My main cardiologist and I are in the process of hammering out a new treatment to add to my regimen right now, actually.  (Routine IVs.)  As for my other meds, we still make adjustments here and there ... probably moreso because my symptoms change over time than because of anything else.  I'm also open to the idea of trying new medications, though, and we do occasionally make a complete change rather than just tweaking a dosage.

I'm not sure exactly how I reached the point that I knew I wasn't going to be completely fixed by medication; I do think I reached that conclusion before my doctors did.  I had a gut feeling as I saw how progressive my illness was from year to year, and I was also taking into account my narcolepsy (which is definitively NOT curable because once the brain cells involved are dead, they're just dead) on top of the dysautonomia; it's not that my dysauto docs aren't *aware* of the narcolepsy with cataplexy, but because it's outside of their specialty and not their focus, it's off their radar most of the time.  I don't think they really consider the fact that there are people who are on disability for their entire lives for "just" the narcolepsy.  Add dysautonomia to the mix and ... well, it didn't take me terribly long to figure out that I wasn't holding out for a "magic bullet."

Once the results came in from my comprehensive testing at Cleveland Clinic, I think that got all of us more on the same page.  The realities of my condition that were revealed when I did cardiac rehab also helped my local team see the day-to-day severity that they likely weren't privy to prior to that, though of course *I* knew because I'd been living it.  At this point, things have progressed to a point where I don't think any physicians who have had substantial contact with me have illusions about my prognosis.  I'm probably going to be posting a thread about some cutting-edge research today, and my discussion of it may help explain the differences in prognosis between different patients and how that may even change in the future as our options for treatment improve.  You may want to watch for that thread to pop up (if I get it done today ... I hope to unless I'm not feeling well enough to get it done).

Best,
-Heiferly.

[Marinella82]

I have been on midodrine for about a month and it took me about 3 weeks to get used to it.  I had anxiety and messed up sleep patterns, and a sinus infection from the medication.  I didn't start feeling better till about a week later.  I still have fatique and muscle spasms but I can stand on my feet much longer.  Everyday it gets easier and easier and today I was bragging to my dad how I felt "normal" again and starting to get my energy back.  I am hopeful that I'll be able to work out at the gym again without getting tired and hiking again.  I think the midodrine brought me back to life again.  I'm even starting work again on Saturday after being on leave for a month.  I thought I'll never be able to work again and would have to be on dissability for the rest of my life.  Stick with it.  My nerologist says it may take up to a month for the midodrine to work well in your system and be symptom free.

[AMO]

stephany,
i am sorry your have lost youur  husbands stepfather. i hope you were  able to be with your family. As far as the ffamily not believing you, that is much added uneeded stess. Keep your head up andd in time they  will realize they were wrong. it is very hard missing out.
Medicine trial can be very difficult. I hope you find something very soon.
take care, amo

[vbc2000]

Hi Heiferly,
Thanks for writing :)  I really need an autonomic specialist.  I agree with your philosophy on living the best you can at this moment in time.  I guess I need to know how long to keep searching for that "right" medication...if there's even an answer.  If it's not realistic to expect to feel ALL better, then I wouldn't keep chasing that outcome.  I guess I just have to be as honest as I can be with the doc and try everything he suggests.  It's so hard to know when you've reached the maximum "feel good" moment.  How did you know when to stop searching?  I know it's gonna take a while...and I'm not the most patient person so it's gonna be hard!

I guess the real answer is...it's different for everyone...and I guess I'll just keep trying till I feel better enough!  Thanks again...I'm glad you've found some relief :)
Stephanie

[Heiferly]

I think it depends greatly on what type of autonomic dysfunction is occurring in the first place, what is causing it (particularly if it's secondary to something treatable/curable), and the severity of the symptoms and/or how far it has progressed.  There are definitely people who get complete symptom relief but there are also definitely some specific cases in which that is an unrealistic expectation.  I personally will never hold that as a goal, but I've had a significant amount of specialized testing and monitoring over a number of years to reach that conclusion and it's not something I would "jump to" lightly.  The only person who might be able to give you insight into your prognosis would be an autonomic expert with extensive testing/data on your case.  Without the benefit of that, I think it's wise to keep your focus on maximizing your quality of life through a combination of medications and lifestyle adaptations.  I say this because even if SOMEDAY you do find the medication that perfectly alleviates your symptoms, why suffer needlessly today and tomorrow while waiting for that day to come if it might not be until next week?  In my opinion, we can all maximize our happiness and quality of life by adapting to this as best we can in the meantime.  That may be as simple as sitting much more often than you used to, and finding ways to sit in situations that normally call for standing.  (If it gets to where you're fainting out of chairs, let me know and I'll tell you all my tricks of the trade for that, hahaha.  Sorry.  I get free license to laugh about that one because it happens to me way too often.)

I should point out that I do have specific medications that do alleviate specific symptoms to which they are targeted as much as 80 or 90% of the time.  The ondansetron (zofran) controls *most* of my nausea/vomiting, and I only get "breakthrough" symptoms of that when I'm in really bad shape; usually they can give me more of the medication at the hospital via IV and it will take care of what the pills I take can't handle.  So there's that individual symptom.  Topamax has cut WAY down on the number/frequency of migraines that I get, and when I do get them I have two different medications to take to stop them that work pretty much with a combined effectiveness of 100% of me, so that knocks that symptom out for me.  So those are two examples of individual symptoms that I've gotten under control by trying different meds until we found one or more things that worked.  But of course that's far from being symptom-free.  Even so, it's a vast improvement and I'll take it!

It's fine to hope for complete relief and I think you ought to.  In the meantime, I'd perhaps consider that "success" often comes in baby steps in dysautonomia treatment so you might not see a dramatic change with one medication.  It's possible even if you are to have complete symptom resolution that it will take a combination of meds that are each (theoretically speaking) only doing a percentage of the job, but in sum make you feel great.

[beema36]

I think some people do have symptoms go away. I am guessing it all.depends on what is causing the autonomic dysfunction. I have also heard that often people who start with symptoms in teens or younger often seem to outgrow them. Don't know if that's true.

[vbc2000]

Hi beema,
Thank you for your thoughts about tomorrow.  I'm trying my best to keep doing what I have to do, and that wake is something I have to do.  Maybe the whole 4 1/2 hours is unrealistic, but I'll try.  The funeral home is VERY close to home so if I bring my own car, I can always leave if I start going downhill. And I'll keep water and food in the car.

I'll count your vote about the medication as "the medication you're on hasn't completely made your symptoms go away."  I think maybe I might be being unrealistic expecting not to have symptoms anymore as a result of taking medication.  Hell, I take 3 medications for depression and anxiety and they're not gone, lol!  Thanks for writing :)
Stephanie

[beema36]

Stephanie- sounds like a.definite marathon day. I will put u in my prayers. I admire u for even trying that.:)


As for.the medication I have never been on it so don't know the answer. Keep hoping for at least one day free of symptoms but so far no luck.
Get plenty of rest, hydrate yourself well and don't forget the salt. Also sit and put feet up any chance u get to help u get through.
Beema