Medication Suggestions

[Guest]

Hello everyone,

I'm new to this site and am hoping I can get some insight into my condition, and more specifically some information on proper medication.

History (male, 47):

1997 - contracted mild hepatitis overseas which resolved on its own,  but I went on to have constant dizziness, difficulty concentrating and severe anxiety. Pulse gradually changed from pronounced and slow to fast and weak. Was put on an SSRI (Fluvoxamine) and wasn't able to work for a year due to these symptoms. Was diagnosed with chronic fatigue syndrome.

Gradually "adapted", went back to work, but pulse remained high. Developed panic disorder and agoraphobia. And sporadic bouts of IBS. But more or less pretty high functioning over the past 20 years and began to seriously doubt the chronic fatigue syndrome diagnosis and began exercising routinely and drinking alcohol with no ill effect. BUT my pulse remained high and in fact over the last 2 years was routinely over 100 and BP around 130/90, which I suspected was my Hyperadrenergic POTS phase.

Last summer I had a bad flare up and began showing symptoms I had in 1997, which remain. My standing pulse can be around 90 and my BP will be 90/70 routinely, which is shocking for a male my age. I've quit the Fluvoxamine since it's no longer working. But I don't sweat or get nauseous when I stand, I can walk for miles, runaround, pick up my kid and carry him no problem, my body feels no fatigue.

I'm just lightheaded, severely anxious, and can't concentrate.

So to this day I don't quite know if I have POTS or not. And I happen to be pretty flexible for a male my age, while standing I can bend over and touch the ground with my hands and bend my wrist to have my thumb touch my wrist.  My left knee started grinding and being painful years back, and I ignored it and kept exercising and the pain went away, sign of slight leg instability was told. But I've never had a joint dislocate and don't have stretchy skin. I'm just really flexible.

Maybe I have joint hypermobility and POTS, maybe I don't (though I strongly suspect I have at least one of them). I seem to constantly hyperinflate my chest and breath shallow and fast, since my flare up, which I suspect is a combination of anxiety and low blood pressure.

My doctor wants me on an SNRi or SSRI to solve my problems. It seems these meds also happen to help with POTS too.

She's put me on Fetzima, which has the strongest Norepinepherine reuptake inhibition of any SNRI (she feels I have a mood disorder, very likely but I feel it's because of the other stuff I've mentioned). 

Say I have POTS and Joint Hypermobility as well (your input would be appreciated though).

I'm wondering what is the best SSRI/SNRI in your experience for this condition? Is Fetzima a good idea for this condition and should I stick with it a couple of weeks and see what happens, or is serotonin the neurotrasmitter I should be really targeting?

Cheers.

 

 

 

 

 

 

[BuffRockChick]

I can't comment on medication, but I'd be curious what would happen if you had a tilt table test done with catecholine blood draws supine and upright.

I was diagnosed with anxiety and mood disorders over 13 years.  After stumbling upon POTS on my own, I checked my supine versus standing pulse.  While doing this repeatedly, I noticed that my "mood swings" are perfectly correlated with my body position.  When I stand too long, I'm experiencing tachycardia.... and cognitive effects which I'm conditioned to describe or experience as mood effects.  I feel depressed, apathetic, exhausted, hopeless, irritable, even rage when standing too long.  These are gone within moments after lying down.

The remainder of my moodiness that's not exactly associated with upright posture are associated with fatigue, nausea, and higher restgin heart rate that I experience during a flare up of symptoms.

My point of view is that a lot of diagnostic criteria for mood disorders can be explained by POTS.

I stay up late at night, being highly productive.  Bipolar disorder hypomania?  Nope!  I don't have POTS symptoms at night, I feel completely normal.  Sometimes I just need a break from symptoms so I stay up late to get stuff done.

I walk faster than most people and get impatient when I have to wait for them to catch up.  Bipolar disorder hypomania?  Nope!  Walking fast keeps my heart rate normal, but when I stand and wait for others to catch up I have tachycardia and cognitive symptoms.

I have tachycardia and shortness of breath while waiting in line.  Panic attack?  Nope.  Just POTS.

I often am in bed all day feeling hopeless.  Bipolar disorder depression?  Nope!  This happens after stress or overexertion.  Just POTS fatigue, and the hopelessness feeling is due to low blood pressure.

I tend to do things spur-of-the-moment.  Impulsive?!  Nope.  I do things when I can, because I can never predict my day-to-day functional level. 

I spend too much money shopping [in stores].  Impulsive!!  Nope.  When I reviewed my spending over 6 months, I found I overspent only when shopping in stores.  When I identified items I regretted purchasing and reflected on the circumstances when I bought them, I make poor choices when I'm standing and looking at merchandise as if to decide what to buy.  The longer I stand, the worse the decision.  (Now I wear a heart rate monitor and stop making decisions when my heart rate reaches a certain point.)

Some days I'm just crabby.  Oooo!!!!!  Bipolar mania, right? Nope.  High blood pressure.

I can go down the list of mood disorders and check off all the symptoms.  **However**, I don't meet the episodic diagnostic criteria, such as with bipolar disorder that symptoms last 2 weeks.  For me, it lasts only until the next change of position, or until I've rested and recovered from stress, sleep deprivation, or overexertion.
 

I suggest reviewing the mood disorder symptoms and be extremely specific about what physical position you're in when your experience them, when it starts and when it ends.  Also, do standing tests at home.  Check your resting heart rate after lying down 15 minutes, then stand up for 10 minutes.  Check your heart rate after minutes 2, 5, and 10.  Heart rate of 90, like you report while standing, is in the normal range for resting heart rate - it's the difference between supine and standing rates that is significant.  If your supine heart rate is below 60, then 90 while standing is significant.  Definitely mention it to your doctor.  

If you have have POTS, I am. ***VERY*** interested what mood symptoms you do or don't have after treating POTS.

[BuffRockChick]

I'm also curious when you overbreathe / hyperventilate.  Do you have tachycardia immediately before you begin to overbreathe?  Is it while standing?  What happens to your heart rate if you don't overbreathe while standing?  I have hyperventilated while standing and noted a significant drop in my heart rate then.

[BuffRockChick]

Forgot to remind you to BE CAREFUL!  I had never fainted, had POTS for over a decade without a clue.  But once when I did a stand test I fainted afterward.  My pulse was only 120.  Thankfully I was in a carpeted room, didn't hit my head on the wall (was close), and my husband was there.  Freaked him out!  I didn't expect it at all!  I'd been much more dizzy, tachy before without fainting, no idea why it happened that time.  Hasn't happened since, but I am a lot more careful and don't try to fight through dizziness at all anymore!

[Guest]

20 hours ago, BuffRockChick said:

I'd be curious what would happen if you had a tilt table test done with catecholine blood draws supine and upright

I live in Canada, and the medical system is not as flexible as it is in the US, you can't just go to a doctor and ask for a tilt test. There's a guy an hour from my City who does a tilt test, 12 month waiting list. My doctor's already fed up with me and has me screened by reception when I call unless I want to see her about going on psyche meds.

I'm sure I have some form of POTS, though I'm puzzled as to why my body doesn't feel weak and I can exercise. After the pool I can sit in the sauna for 10 minutes and be fine, though I can tell my pulse is over 100. It's during the drive home when I begin tightening my chest and getting dizzy.

Whether this is POTS or anxiety at this stage is really an academic discussion and may not help me (though I'm curious as ****). Since POTS and anxiety both get prescribed SSRIs, I want to know in experience of people on this site,  which one is best for POTS, so I'll two birds with one stone.

20 hours ago, BuffRockChick said:

I'm also curious when you overbreathe / hyperventilate.  Do you have tachycardia immediately before you begin to overbreathe?  Is it while standing?  What happens to your heart rate if you don't overbreathe while standing?  I have hyperventilated while standing and noted a significant drop in my heart rate then.

I don't actually hyperventilate as a distinct event. I just know I keep my diaphraghm tight all day long and hyperinflate my upper chest ALL DAY LONG and feel zonked out. It may be a counterproductive attempt by my  body to keep my blood pressure up, which obviously isn't working. Much like you, I begin to feel normal after 8 pm, my breathing moves lower and becomes deeper. Once I've had my after dinner glass of wine I basically feel human for an hour or so and then go to bed.

[BuffRockChick]

I don't think POTS versus anxiety (or both) is a moot point, JMO.
Physical ability to exercise does not negate POTS.  There are athletes and "weekend warriors" with POTS.  Exercise is proven therapy to reduce POTS symptoms.  Being deconditioned is not diagnostic criteria for POTS.

It seems like there are still self-care things you can do to improve wellbeing without doctor support.  You can control your breathing.  Not easily, not constantly, but you can set alarms to remind you to slow down, relax and breath deeply.  What else is within your control that you can do to improve your quality of life?

[Guest]

1 hour ago, BuffRockChick said:

What else is within your control that you can do to improve your quality of life?

Within my control?

I tell you I drank 6 g of salt in 2 lt of water every morning I got up for a few days which I ended up urinating all out by 10:30 am at work, so obviously that method isn't going to help me.

Been curious about liquorice tea, I've read it can almost do what Florinef can. Been too chicken to try it given it can mess with your adrenals and potassium. Might still try it.

Things not within my control:

Get more sleep. This has been difficult since my divorce and my 50% custody of my 2.5 yr old. 

Strum my acoustic guitar and sing loud from my belly. I'm convinced 20 yrs ago this is how I got over my original POTS rut. I think standing and singing for hours on end did something to my vagus nerve and got me over the POTS to the point where my body was almost autonomically normal. Can't do that right now because I live in an apartment. I've been tempted to drive to a rural road and do this out in the boonies. Thanks to POTS brain fog I'll need lyric sheets to remember what to sing, but they'll get blown off in the wind. Been thinking about laminated lyric sheets.

That's how far I've come with the miscellaneous stuff.

But I do think a good SSRI will go along way, because neurotransmitters control not just your mood but also you autonomic response.

[MomtoGiuliana]

Welcome to the forum.

I was prescribed a low dose SSRI for POTS.  It did seem to help quite dramatically, although there was a long adjustment period during which my symptoms worsened.  For me it was worth it to stick with it through the more difficult symptoms because eventually I felt loads better.

There are studies that indicate that about 50% of POTS patients improve with an SSRI.

[Guest]

2 hours ago, MomtoGiuliana said:

I was prescribed a low dose SSRI for POTS.

May I ask what that SSRI was?

[AbeFroman]

Hello Pre, 

 Your story sounds very familiar. I am a 46 year old male who has dealt off and on for years but recently got worse. Before any POTS diagnosis I was told I had depression and anxiety and tried almost every med out there, including Fetzima. I remember Fetzima clearly because I felt it was working great and after about 4 weeks it made me very manic! I was up for two days making plans on writing a book or two, moving furniture, cleaning and overspending. Did not go well. I tried different strengths to no avail. For whatever reason I seem to have a very bad time with SSRI and SNRI's the main problem usually is sexual side effects but there have been others as well (headaches, sweating, etc.). Being a man with no drive does NOT make depression or anxiety better I have learned that, especially when married!! I am currently on Trintellix (formerly Brintellix). It hasn't helped POTS symptoms much but does tamp down depression or keep my mood more even. I have been on it for about 10 months and it's been..well, EH! Not amazing, The sexual side effects tend to wane, some days are ok others not so good. I would love to be more help but as I say for whatever reason I tend to exhibit most side effects from psych meds. I can say for sure my least favorite was Cymbalta, I had withdrawal brain zaps from that for at least a month! No fun. 

Also, instead of the tilt table you can try the old fashion way. Supine, sit, stand test. My Cardiologist did it first in office, Basically keep a Heart rate monitor on an check it after 2,5 and 10 minutes in each position (although he only had me sit for 2 minutes) a jump of 30+ bpm from supine to standing is a good read for POTS. Hope this helps.

 

Best of luck! 

-A

[Guest]

37 minutes ago, AbeFroman said:

I was up for two days making plans on writing a book or two, moving furniture, cleaning and overspending

I'd love to be manic rather than dissociative anxious any day. All Fetzima is going right now is giving me palpitations all night and keeping me up. 

I almost have no doubt I have POTS, I mean right now as we speak my standing pulse is 122 and my BP is 100/80 and I'm completely calm. Those numbers only mean POTS.

But I seem to be able to exercise, so I do think most of my symptoms are neurogenic but likely aggravated by mild POTS. In fact my mental symptoms right now are serious and I need to pick a good med to go on quickly.

 I've read about liquorice root but don;t quite have the knowledge to know how to go about using it for POTS, what time of day to take it, and how it would interact with SSRI/SNRI

I'm even tempted to pick up smoking (quit 20 yrs ago) to raise my BP.  

[BuffRockChick]

I'd like to go back to something you said before.  You were talking about standing, playing guitar, and singing.  You thought is was significant in your physical wellbeing.  

I think it's even more significant than you suggest.  Standing for long periods reconditions your body into the upright position, and I've heard of it being used in a treatment plan for POTS.  The deep breathing from singing is significant as well.  Those deep breaths, and the "held exhale" as you sing change your blood gas chemistry to conserve sodium.

While you can't sing and play guitar at home the way you'd prefer, you can approximate the activity.  You could join a choir, be a street musician, or practice standing yoga poses with deep breathing.  Really, you can simply stand up and breath deeply with a long slow exhale. It's not as enjoyable as singing, but you can do it in your apartment without needing to remember lyrics.

As far as mental and emotional wellbeing, making music and mastering skills are powerful medicine of themselves.

It's certainly possible to have POTS and mental illness.  Perhaps getting relief from mental and emotional distress will help you be more able to cope with POTS, and like others have mentioned, SSRI And SNRI are sometimes used to reduce POTS symptoms.  Without getting a full medical workup to find the sources of POTS symptoms (which may be idiopathic anyway), there's really no medication advice anyone can give - it will be guess and check to see how your body reacts.

[Guest]

7 minutes ago, BuffRockChick said:

As far as mental and emotional wellbeing, making music and mastering skills are powerful medicine of themselves.

I hear you BuffRockChick. Between my severe mood disorder of late, 9-5 job, and 50% custody of my 2.5 yr old, I'm trying very hard to muster the time and energy to find a way to get back to playing and singing music.

I'm in fact an amateur musician, and when I write and compose music it takes me away so powerfully that I basically become symptom free. To the extent that when I'm done and pull myself away from it and "come to" I get the same rush of dread and anxiety I get when I first open my eyes in the morning in a vulnerable state.

[BuffRockChick]

Oh I can relate to that @Pre! I figured out that in the mornings when my POTS is worse and I fall a lot, rather than stay in bed and get more deconditioned, I can practice piano.  I started taking piano lessons.  Expensive, but well worth it.  I've been playing piano for hours each day rather than laying in bed for hours.  I feel proud of the progress I've made too.  Sure beats laying in bed feeling sorry for myself!

I have a 2 year old too.  Music sure tames him too.  He's so busy-busy and hard to manage usually, but he'll snuggle endlessly if I sing to him. Usually nonsense improvised stuff, with lyrics like "I'm putting the milk in the fridge!" sung in opera style or blues or whatever suits my mood.  My point is that music and toddlers intersect.  Rather than trying to add time for music, maybe you can multitask and sing with your little one.  You've found something that makes you feel well so the more you integrate it into your life, the better you will feel!