Medication Conundrum

[Kooky]

Hi Everyone,

This is my first post here but I've been lurking for a while reading what you all have to say and a lot of it is extremely helpful. I'm so glad I found you!

I am new to all this and en-route (hopefully) find out what is going on with me. At the moment I've been told I "Possibly have PoTS"

Anyway,

I am here to ask your personal experiences with medication and the side effects. How do you figure out whether the pro's outweigh the cons enough to continue taking them? Right now I'm in a bit of a pickle as to what to do. Obviously talking with my GP is a good step and I'm due to do that tomorrow morning but I'd really appreciate some thoughts from the voices of experience too.

So far I've tried Bisoprolol which was an absolute no go. I don't think it made a great deal of difference and just completely wiped me out. I stopped that and have been trying something else

Right now I am trying Ivabradine at a dosage of 2.5mg twice a day. There is no doubt what so ever that it is bringing my heart rate down when resting and standing which is a nice feeling. It's great being able to walk without feeling my heart pound in my chest like a jack hammer and without getting puffed out.

However, taking it is also exacerbating the feelings of fatigue, light headedness /dizziness that follow me where ever I go on a regular basis. I find I am a bit more 'wobbly' and weak feeling when standing up too which is something I've only experienced once in while before taking it. I'm finding it hard to take information in. Like I can watch a TV show or have a conversation and hear what is said, but not actually remember what I saw/was said which is really annoying. I'm not sure if all this is linked to a fall in blood pressure that seems to have occured since I've been taking it.

I've been taking it for about a week and a half so far. I wonder if taking it for longer so my body can adjust to the 'new settings' is a good idea?But as I said, I'll discuss this when I see the doctor tomorrow and see what he has to say.

Thanks for reading!

[ramakentesh]

Dizziness is generally treated with florinef or pressors like midodrine or phenylephrine. I also find pseudoephedrine helpful.

[AussieOI]

_{I would be trying to find a doctor who knows a lot about POTS - there are some UK doctors listed here on this site.}

_{Also ask for a TTT - that is the gold standard test when it comes to diagnosing POTS/NMH}

_{You need to be seeing if you actually have OI and suffer an increase in HR, drop in BP or both when standing}

_{Only when you really know what is wrong can you begin to treat the problem}

_{Also (pending doctors advice) I would be also looking at doing some heart tests and ruling out anything there.}

[bebe127]

Kooky,

Welcome to the club!! Sorry you had to end up here, but glad that you found this site. It has been quite helpful to me. Those on this site are so compassionate, helpful, and encouraging.

I agree with Aussie in that it would be helpful to nail down a dx. This can be a long road unfortunately. I too was dx. with "probably POTS". I would try as well to get a TTT if you have a hr increase of 30bpm or greater upon being upright, you'll get a dx. of POTS. This of course doesn't necessarily mean that that is all that is going on. That would be something to discuss with your dr. For me personally, I had an increase of 70-90bpm after 3 minutes during my TTT, although my bp didn't lower, it actually increased. Dr.s use different meds for different things, so I think it's important too, like Aussie said, to talk to your dr. and possibly see a Cardiologist or Electrophysiologist to rule anything heart related out.

Medication can be a tricky thing, it is basically trial and error. You need a dr. that you can work closely with that is willing to listen and help.

Best wishes to you as you begin this journey. Again, glad you found this site, you are not alone in this

Be well,

Bebe

[looneymom]

Welcome to the forum Kooky. I agree with the post above. If you strongly suspect this as your problem, try to find a specialist to help. Medication can be tricky and confusing.

[Kooky]

Thank you for the responses so far it really is great to have the people that have "Been there done that" to ask questions to.

A bit more information for you..

My GP - who was the one that suspected it may be PoTS arranged for an appointment at the local hospital to see a cardiologist. He wasn't really all that helpful unfortunately and dismissed a lot of what I had to say. He was a little surprised by the results of that test they do where your blood pressure / pulse rate is taken sitting and then at various points for ten minutes while standing. My resting pulse rate was 84 and shot up to 160 while standing up. I was shaking like a leaf and feeling terrible and apparently looking rather pale. The nurse that did the test looked really concerned and was saying how strange and unusual what happened was.

It was the cardiologist that suggested trying these medications to see if they helped - which the Ivabradine seems to for heart rate at least. I forgot to mention earlier that the while taking Ivabradine everything looks a whole lot brighter. The sun hurts my eyes if I'm not wearing sunglasses. I was told if these medications didn't help the next step would be seeing a specialist. I kinda hope that happens whether it's helping or not as I'd really like a diagnosis that is a little more certain than possibly maybes. Even if it's not PoTS I think something is going on.

[corina]

Welcome to the forums Kooky!

[Sufilizard]

This is my first post too. Though I've been checking out this site for a couple of years now.

I had a TTT and it looks like I have POTS, but I've had a real hard time with meds. For me, one of the worst problems I have is terrible, chronic insomnia (early waking, I don't usually have trouble falling asleep) which then makes all my symptoms get worse when I go a few weeks without sleep. The first time (pre POTS diagnosis) Lexapro was the first thing that helped insomnia. But over time, meds seem to lose their effectiveness so I end up trying a new one.

Recently, I was actually in a pretty good place for a while with Nortryptaline, but some of the other side-effects were causing problems so my doctor switched me to Citalopram, after a week of terrible anxiety, nausea, insomnia, etc. I seem to have tapered off to just the terrible insomnia. In the past I've tried all kinds of things for insomnia to no effect - including prescription sleep drugs like Ambien, etc. I still wake up about 2 a.m. mentally wired, but physically dead. (I wonder if this is the adrenaline thing, I've read about on these forums)

I haven't seen any kind of specialist yet, I'm just dealing with my family doctor. I seem to have trouble getting anyone to take the POTS thing very seriously - including my wife who is a nurse who does TTT, though she had her co-worker do mine. Has anybody else had any success stopping the middle-of-the-night-adrenaline-rushes-for-no-reason?

[bellgirl]

Welcome to the site . You need a knowledgeable doctor who understands and believes dysautonomia is a real illness. Add one medication at a time, so you know what it is doing to your body; don't loose hope. Beta blockers for tachycardia are tricky. You may want to suggest one with a longer half life. It's only been about 2 years since my diagnosis, and I have to say, I'm almost "normal", but I'm depending on 6 regular medications to keep me balanced, and I'm careful with my diet.

Sufilizard, I take Clonazepam for sleep. I used to have the adrenaline surges in the middle of the night, and now I sleep like a baby. I also have sleep apnea. I very rarely take an Ambien, but on occasion, I will, when needed.

[issie]

Mast cells seem to love to degranulate at night when we are trying to sleep. Some of us use our H1 and H2's at night to try to eliminate the tachy that wakes you up things. I'm also on GastroCrom which helps to suppress the release of the mast cells in the first place. An over the counter mast cell stabilizer (that is not as strong) is NasalCrom.

Issie

[Sufilizard]

Thanks kimbellgirl, I'm reluctant to get too many drugs flowing through my body, but I need to find something to help me sleep. So far Benadryl seems to help a little, but I'm still only getting 4-5 hours of sleep, which is better than 1-3, but over time it still takes it's toll. I tried Melatonin, but it did absolutely nothing to help me sleep.

[Sufilizard]

issie, what are H1s and H2s?

[issie]

Benadryl is an H1 - histamine blocker 1 (Also, Claritin and Allegra) and an H2 would be either Zantac or Pepcid. I just read a few more of your post and I'd really seriously look into Mast Cell with your symptoms. It sounds like this could be part of your issues.

Issie

[Sufilizard]

Thanks issie,

I'm just wrapping my head around POTS, but I've seen a couple of comments today about Mast Cell and it seemed like something I should learn more about... this is like peeling an onion :-(

[issie]

Thanks issie,

I'm just wrapping my head around POTS, but I've seen a couple of comments today about Mast Cell and it seemed like something I should learn more about... this is like peeling an onion :-(

Yes, it is a process and just takes some time, lots of trial and error and perseverance. We are all looking for answers. I think some of us are getting closer.

Issie

[bebe127]

POTS is enough for any person to wrap their head around. I too suspect that I might have MCAS, but really don't know where to turn. I am going to bring it up to the dr. when I go in next. There was a great article in the Dinet Newsletter about MCAS: http://dinet.org/2013Winter.pdf and there have been several threads on here about MCAS, although for some reason I can't get the "search" to work, you might just have to scroll through the discussions. Problem is, is that there are so many disorders/syndromes with overlapping symptoms that it is hard to figure out.

I feel like I have to go into my dr.s office and say, "Well, I have this, this, and this (plus a bazillion other symptoms)...can you please test me for MCAS, Lupus, Addison's, Grave's Disease and a host of other things please?" I go over this senario in my head numerous times with the possible responses from the dr. being: "This lady is crazy and needs a padded cell." or "This gal is a couple cards shy of a full deck." Of course my hope is that they will say, "Of course, Mrs. so-and-so, we are going to get to the bottom of this and get you back to your old self once and for all!" A girl can dream, right?? Anywho, press on we must, if we are going to advocate for our own health. I mean really, if we don't...who will??

And yes, it's like peeling an onion, one layer at a time sadly, with tears in between.

Hope you get some answers Sulfilizard

Be well

[Sufilizard]

Thanks for the responses people. I'm sure everyone here realizes how frustrating this can be to deal with.

[AussieOI]

Kooky,

It really sounds to me like you need to get a second opinion and see a cardio who knows a bit about POTS.

I lived in London for 10 years and as a general observation some of the NHS doctors were not great - not sure if your doc is NHS. I never had POTS while in the UK so I am afraid I don't know much about UK POTS doctors.

It might be that you have to go to London to get someone who knows more about POTS etc.

Good that you feel a bit better on that medication but in my opinion if a cardio is presented with a patient with your symptoms then I would have thought that they really should undertake some basic testing.

I know there are some UK POTS societies for memory - they might have some good tips.

Aussie

[Kooky]

Thank you for the words of wisdom everyone.

After some discussion with my GP this morning it has been decided that, for now, as the Ivabradine is helping with heart rate I will continue to take it. If I find that the side effects are reaching a point where they are far outweighing the good it is doing we'll look at things again. Maybe if this situation arises - or maybe before - just in case it does - I can do some digging to see what helps others with similar problems. Someone on this thread mentioned florinef and midodrine that may help with the dizziness. That way I think I'll be better equipped to help him help me.

As he is unsure of exactly what he can do to help he suggested that he writes a referral letter to one of the specialists in London where, hopefully, we'll end up with a few more answers as to what is going on. I'm happy with the outcome of today's appointment. Now it's just a case of playing the waiting game and learning what I can in the mean time.

Thanks so much for your help and support so far.

[AussieOI]

Good outcome Kooky. At least the cardio realises he doesn't know a lot about it and is willing to refer you to a specialist - great result.

Midodrine and Florinef help many but I still reckon you need to establish why you are getting dizzy in the first place.

Good luck

[bebe127]

Kooky,

Just hearing that the appointment went well, you were happy with it, and the doctor seems to be willing to help you out is such an encouragement. Unfortunately, the waiting game is a necessary evil when dealing with this (and many, I suspect) chronic illness.

Best of wishes to you

Be well!