When Do You Say Enough..to Side Effects?

[Becia]

Just curious. I know we all have different levels of tolerance to things.

I'm beginning to think I'm the biggest wimp imaginable. I'm extremely sensitive to medications, and have a wide variety if side effects from every single one of them. Some are mild, like the scalp tingle thing the midodrine does. Some are severe (to me, at least), like the constant migraine level of my dose of florinef (0.2 a day). Several of my meds cause increased dizziness, headaches, sensitivities to sunlight, sometimes trembling, and even had one that increased my seizures.

Lately though, I'm getting frustrated. I'm finding myself going "is this my condition, or is this a medication for my condition? Is it worth trying to pursue using this treatment if it's going to make me feel______ (enter whatever side effect I'm dreading)?"

It's such a touchy game we have to play, the weighing of the pros and cons. And after spending three days in the hospital this last week for a possible infecte picc line (so far, everything has come back okay, and it's still usable) and a new diagnosis of peripheral dizziness (aka "you have vertigo on top of vertigo" according to the neuro consult), I keep thinking about this. My cardio had prescribed Bystolic for my tachycardia, but my insurance would only cover Zebeta, so last night was the first night on it, and wow... Um, yeah. I didn't do well with it. Maybe it's because I'm super duper dizzy right now with everything, in the midst of a flare? It just made me feel even more off.

I've weighed the pros of midodrine, and the problems I have with it, I can mostly tolerate because it has made sitting up a bit easier. I keel going back and forth on the florinef, because I am so susceptible to migraines, it's hard to see how having a constant headache that makes me extremely ill to the point of being hospitalized for dehydration a lot (which picc line does help, as long as I can keep it) can outweigh it just making the midodrine work longer. The current meds I'm on for my stomachs pyrotechnics (aka, vomiting), dizziness and headache. Sometimes the meds work, sometimes they don't.

I try to stick it out for a couple weeks to really give myself a chance, but even after all these months on everything, I'm still suffering those side effects they said would go away. I hate to think I could be on something that is harming more than helping (and I've been there with my Ssri crisis beginning if the year, and my pain medication fiasco), but at what point do you go "okay this isn't working, next treatment option please?"

Don't want to look like I'm not willing to try anything and everything to help my case manage better, but at this time, I'm feeling like everything is going back to pre diagnosis problems, and everyone is adding meds, but not taking any away. And maybe I'm just frustrated now because of this new development. I just got a grip on how I needed to do certain things, and now everything I can manage reasonably, is heightened to a level of insanity, lol.

[looneymom]

Hi Becia,

The more doctors you have involved, you tend to run into this problem with the medications. This got to be a problem for us last year after my son had more symptoms show up after the flu. Our GP and neurologist tried to add a few medications to help these symptoms but they made things worse or we saw no improvement. Needless to say if it did not make things better or made things worse, my son did not stay on the medication. You will have to be the judge to decide if the side effect is worth staying on the medication. No one wants to suffer severe symtoms or be in any more pain than necessary. But if a side effect of medication makes something more tolerable in your condition than it should be your decision if you want to remain on this medication. Just make sure the medication is not going to cause you more problems in the long term.

My son was also on Flornief for a long time and I always thought it was helping him. However, because of his headache and other symptoms, our doctor took him off of it to see if it would make any difference. When I took him off of it, it made no difference in his symptoms and no difference in blood pressures. He was also on the same dosage as you are. In the beginning this medication seem to help him, but now it has no effect. So we assume his body outgrew it's usefulness but don't know why. If you are still able to stand up and walk around some, it may help with that function. My son has not been able to do that for over 18 months.

It's fairly easy to get discouraged when you are not getting relief with any new medications. I would advise you to check with your doctor and ask about how soon you should be able to tell a difference with your new medications. When you feel like you have given the medication a fair trial, it's time to move on and explore other avenues of treatment.

[angelloz]

I hear you! I am EXTREMELY sensitive to medications. And it does cause problems for me with treatment. Like you I want to try but I have been diagnosed with MCAD and think this is part of the problem. I also have weight loss problems so feel like I react less to low doses but can't get support on this. I also have migraine problems and you are right...how does the vomiting from migraines outweigh help from say florinef. Wish I had help and answers for you but wanted you to know I understand! I no longer take florinef or midodrine. I feel no worse most days and have fewer migraines..( although still constant head pain )....so....???? Who knows.

[Becia]

I've had this discussion with my doctors, and I had one basically tell me "why would you want to not take your meds?" I told him I wasn't asking to not take anything, but maybe reduce something that seems to be causing more issues. I keep getting harped at for my hydration, well, I'm throwing up my toenails sir, that's dehydrating. No wonder I have refeeding syndrome half the time, because my body just naturally goes in reverse now.

I can tolerate the midodrine for the most part. The florinef I was in my doctors office two weeks ago crying going "I can't do this anymore". My gp is great, as he's been letting me dose myself how I feel I need to, since I watch my bp and hr very closely at home. But since I've reduced it to once a day, my bp has tanked, so it helped there (maybe a bit too much even, it ran 140-150 systolic, now I haven't been able to get it above 120, running more 100-110 systolic). But agony. Headache, vomiting agony.

I just keep thinking back to the Paxil situation past February, and all the seizure activity I've had lately. I don't ever want to feel Iike that again. I'm willing to try things, but there's gotta be a line drawn, and more importantly, the doctors need to respect how I feel with everything. Some are great, some arer kinda "eh".

Just curious of everyone else's level of tolerance and how long do you try a therapy.

[lejones1]

My rule is: if the pros don't clearly outweigh the cons, don't take it. There isn't a cure for POTS, so realistically, anything you're taking is just to make you feel better. If it's not making you feel better, there's really no point (of course this doesn't apply to things like seizure meds). For me, a lot of the time my vitals don't even really correlate with how I feel. What's the point of me being on a beta blocker to have a decent heart rate if I feel too sick to get off the couch? For you, it sounds like maybe you should try a break from Florinef? See how much it affects you?

I've had pretty severe neuro reactions to almost every medication I've tried since getting POTS. I can tell most doctors don't believe me and one even refused to keep seeing me if I didn't continue a med that was causing horrible side effects (we never spoke again). I'm sure most people on here can understand your frustration - it's hard enough to treat POTS anyway and once you add in all of our sensitivities sometimes it's just like..what's the point?!

I found an allergist who treats mast cell disorder, which I don't have, but thought he might be familiar with POTS and sure enough he is. In fact, I'm fairly sure he has a better understanding of POTS than any other doctor I've seen, including neurologists and cardiologists, aside from a POTS specialist. Anyway, he's been incredibly helpful explaining possible reasons why POTS can cause medication sensitivity and has a pretty good theory for my particular reactions. When I get nervous about trying something, he helps me figure out which side effects might just be annoying, and how to manage them, and which are actually dangerous. And more than anything, it just feels great to have a doctor believe me (and vouch for me to other doctors). I was so used to trying to explain my reactions to doctors and getting looked like at like I was crazy. Instead this guy launched straight into a 10 minute explanation of why my nervous system was reacting the way it was. So my point in saying all of this - I strongly encourage you to find someone, maybe an allergist, who understands the medication sensitivities of POTS patients. Someone who can help you figure out what you need to bear with and what's not worth it. An allergist who is familiar with medication allergies/sensitivities will have a very good understanding of potential side effects, even the weird ones, and should be able to address that.

[Goschi]

Hi, Becia!

I am so sorry you still have to go thru bad times - I send you as much of power and strong nerves as you need!!

Concerning side effects: I follow a very simple rule: Everything which is an overall improvement in life quality, I will accept. If general life quality is lower than before, I won't take the med.

Of course it is based on my subjective definition of life quality, but that's the only parameter that counts for me.

[Bigskyfam]

I only have to add my experience with bb. I had an episode of general feeling unwell and lost vision in my right eye for a few hours. Since then I've done no meds. Focused on exercise , fluids, salt elevated head of bed. I hope that I don't have a severe crash again. I'm on the mend. I told my hubby I'd try something new if that happens but still a little shy. I started iv therapy once a week. Not sure how I feel about it

[Becia]

I'm thinking the Zebeta is gonna be a no for me. Took my second ever dose last night, and spent the day sicker than sick. We looked up the side effects, and all if mine have shown up in the "overdose" list, which is telling me yeah, my body isn't handling this well. Don't know if titration would help or not, but something that is dropping my bp when my bp has been residing in the low lands lately, doesn't help me. Today, I've struggled to sit up, to stand has made me hit the ground. I've had several seizures, I'm dizzy upon dizzy... I'm thinking this isn't gonna work.

But giving up after two days, really bothers me. I guess I worry about what others may say, like I'm not trying hard enough or something, maybe if there was a way to control this extra dizzy on top of my usual hat I can tolerate. Maybe this is all just a major, major flare, because I'm super stressed with home and family life. Maybe I'm doing too much,

But if I haven't been unconscious today, or asleep, I've been in tears from pain, frustration, constant vomiting. I'm not taking it tonight, may give myself a few days and try again. But right now, I just wanna attempt eating this banana (which the smell is making me sick, but it's on the easy foods list right now), set my alarm for my doctors appointment tomorrow, and sleep some more.

[corina]

Becia, it doesn't matter what others think, what counts is what this med does to you. And how it makes you feel. You are the one to decide on whether your body can handle this or not and if the answer is that your body cannot that is okay. There's nothing you can do and that's okay because you have tried. For me it is often the case that my "head" can handle more than my body can but I've been told that I need to listen to my body more. Since then I am trying to find the right balance so that the two can work together. Sending good thoughts your way!

[looneymom]

Becia

Side effects of medications are no fun. I have had to stop some medications after the first dosage with my son. If the body is not going to tolerate it, then your doctor needs to know how your body is reacting.Hang in there, you are not giving up just because your body cannot tolerate the medication. It sounds like more testing needs to be done so you can get to the bottom of your medical condition and get the right treatment. Only you can be the judge of what your body can tolerate not the doctor. Sending gentle cyber hugs.

[IceLizard]

Hi Becia, I am also very sensitive to medications and my doctor knows this so he gives me tiny doses to avoid side effects. He started me on 1/2 a 2.5 mg tablet of Zebeta at night. It is working very well for me and I am able to sleep better. I feel asleep last night without taking it and I woke up at 3:00 am with a racing heart. I am back to feeling better now that I am back on it. Sometimes I go on and off medications several times (if possible) just to be sure what they are doing to me. It is clear to me that the Zebeta is a net positive for me. Other beta blockers I have not tolerated as well.

What dose of the Zebeta are you taking? You might try lowering it and seeing if the side effects go away.

I hope you feel better soon!

[Becia]

My cardio started me off on 10mg right off the bat. Kinda saw that and went "really?" And his response was "you have high blood pressure, so yeah, you need that assistance too." Never mind the past three months of readings and information he wanted from me showed my bp being better regulated by me reducing my midodrine unless out and about, and tweaking my florinef as well. That brought it back to a high, but not super high, number where my gp and I agreed it should be. And I was semi functional, except for the fact I have some wild tachy. Now that I'm somehow coming down with something and my body is stressed, and right now, my bp I can't get above 110 at all it seems, which is on the way low side for me, so I'm slightly terrified taking something that is supposed to reduce that more, thus making me hard to function because my bp is falling back into the Potsie realm.

Kinda funny, we take so much to raise our bps and all, and then it's too high in some cases, so they put us on something to lower it while we are on the "uppers", lol.

Working in further testing, right now it's just getting someone to order it. My gp is an amazing guy, but even he admits he's still learning about this stuff. My current cardio has referred me to OSU for a doctor up there because I'm one of the worst pots cases he's ever seen and I'm out of his realm of care. And I appreciate him realizing this, both of them really. That alone makes me feels safer. My neuro is just beginning in my case, and only seeing the migraines, and his current thinking is if everyone else can get their act together, then he knows what he need to research and do with me. He has some experience with pots, and agrees this is more on the neuro side than the cardio side, as diagnosed by his collegue, but after my last clinic basically told me "yep, pots, go back to your normal doctors, they can treat it", he's not quite sure where to go.

I'm still patiently waiting for Toledo, just to be told that my insurance isn't one that he accepts. I'm hoping by the time my appointment comes, it might be, or it may just not happen, which hurts after waiting so long to see a specialist that seems interested in my care compared to my last clinic experience. Honestly thinking about trying To go to the Vanderbilt clinic as well, even though I was denied for their inpatient research program, and it's 6hours away, maybe their outpatient might help get the testing I think I need? Or at least point me in the right direction. And frankly, a vacation would be nice. Even a few days.

I kept telling my previous cardiologist that I didn't think the Paxil was helping me, but hurting. I, I guess like an idiot, listened when he said I just needed to give it time, and get it into my system better, hence why he upped the dosage and I obliged. I just want anything to work, so I can feel like I can survive this. That upping and messing with my dosage, and going was long as I did with it, had me in the hospital, which totally made me realize how much I'm on that essentially has messed me up more. I dealt with so many side effects, for what? It actually made me cry when I realized how many tried to hurt me.

I didn't take it last night, and I haven't taken it tonight. Been vomiting enough today that I basically gave my body a break from everything except some Tylenol, a Claritin, and my liter of fluids. If I wasn't throwing up, I was sleeping off some seizures from yesterday. Tomorrow I see someone at my gp's office to maybe get something that will help reduce some of the dizziness, and once that calms down, maybe I will try it again. It would be great to sleep without my heart going about 120 or so, but not sure I'm strong enough to tolerate the effects.

[looneymom]

Hi Becia

As I read through your post, It made me think about some experiences that I had with some of Tyler's doctors. Tyler basically has one doctor now that is willing to deal with his medical condition. Your GP and cardiologist seem like they want to help but feel really overwhelmed by your situation. Do you think your GP would be willing to run other testing if you were able to find articles that matched your worst symptoms that are also associated with POTS symptoms with the understanding that your GP could send you to another doctor that specializes in treatment for that specific illness? (Sorry about run on question).

If you coud get this kind of help with testing, you might could get a handle on all of this. I also know this is easier said than done. In my son's situation, it took about 2 years with my cardiologist to realize that my son's medical condtion was something more than just POTS. However, our cardiologist tested for things that POTS symptoms could show up in. Your GP could probably do more extensive testing than your cardiologist. If you could go this route with your GP, you might coud get some more answers. I had to go this route with my son's cardiologist and it's been worth the effort.

[IceLizard]

Of you don't mind traveling you might also see if Dr. Amer Suleman would take your insurance. You can get into see him much more quickly than Dr. Grubb (I got in within a month). He specializes in treating dysautonomia, will run all of the necessary tests, and is extremely thorough. I am so glad that I have found him. I just wish I had gone to see him earlier.

In the meantime you could try taking only 1/4 of the 10 mg pill. That may help your heart rate come down without causing side effects.

His website: https://www.theheartbeatclinic.com/

Sorry you feel so poorly!

[bellgirl]

Zofran works for dizziness/vertigo. The high heart rate attributes to the dizziness, so IceLizard has some good advice there. I started on Florinef two weeks ago, and at first it was great. I actually had saliva again!! I have a lot of corneal problems, if I don't keep my eye regimen, because of dehydration, and my doctor says the infusions only last for a day. Now I've started having the headaches, which naproxen hasn't even touched. They told me to call them at about this point to let them know how I'm doing, so I will. I'm very careful with medications and was very leary of this one, because of how it works in the body. It's like a synthetic aldosterone, and it will eventually stop your body from producing any, so it's not to be taken lightly. I'll give it a few more days.

[rgny]

Becia, I'm not even sure what to say on this because I'm one of those odd POTS ducks who is not medicated. I take nothing because I am so sensitive to medication side effects when I'm in a flare. I give my doctor the side-eye when he tries to whip out the prescription pad. Over the years I've tried beta blockers, calcium channel blockers, an SSRI, ranitidine, etc. Nothing improved my quality of life (except for the SSRI briefly) and all had differing and unacceptable side effects. I know how POTS makes me feel and for the most part, I can deal with it using lifestyle modification. I don't think it makes me a bad patient or someone unwilling to do what is necessary to have decent quality of life, it's just that for all the testing I've had and all the medication trials, nothing has made that big of a difference in how I feel from day to day. Even now, I have a laundry list of medical tests I need to undergo and I've decided I'm taking the rest of the summer off and I will don the big-girl panties in September and deal with it all then.

And you are definitely NOT a wimp.