What Would You Try Next - Looking For Advice

[DeGenesis]

I have an appointment with a cardiologist in the electrophysiology and arrhythmia department of a local hospital on Friday. He is easy to talk to. Last time I saw him he took me off of Florinef due to high blood pressure. He advised me to drink a lot of water and eat a lot of salt.

My POTS presents as follows:

- Immediately upon standing there is a large increase in heart rate (HR)

- Over the next 10 minutes one of two things will happen:

1) Blood pressure (BP) will increase dramatically. Slowly HR will decrease. Systolic pressure lowers slowly, and diastolic pressure increases. Thus my pulse pressure (the difference between systolic and diastolic pressure) becomes very narrow. I can usually stand at this point, but the narrow pulse pressure and high diastolic pressure may indicate reduced venous return to the heart (blood pooling) or diastolic heart dysfunction.

2) BP and HR will continue to increase until I feel presyncopal and must lay or sit down. This usually occurs with acute exaccerbation of POTS, such as being dehydrated, or too hot.

- After standing, sometimes my hands and feet become cyanotic (purple) and puffy.

Ok.

- I take clonidine 0.15 mg twice a day. This has controlled my BP and HR very well, although sometimes it lowers BP a little too much and I experience reflex tachycardia.

- I now experience little to no presyncopal symptoms. If I do, they are mild and can only be detected by slowness of speech and thought.

Here's the problem:

While clonidine has normalized my vitals, I am more fatigued than ever. Fatigue was a problem before I "got" POTS, but clonidine has made it much worse, such that now that I can stand, I seldom do so because of the fatigue.

I have no idea what "subtype" of POTS I have, or if it even matters. I am not sure if the high blood pressure is a compensatory mechanism to maintain cerebral perfusion, or due to over compensation of my SNS.

Is there any medication I might suggest to the cardiologist?

[Raisin]

Hmmm... Well not knowing complete testing history, I wonder if you have had the test (radio nuclear test? I can look it up as I had it done) to see if blood is pooling (certainly sounds like it) and how much is pooling. I also had a test on the calf muscle pump (ultrasound) to see if it is functioning correctly. Midodrine has helped me alot but I have low blood pressure. It may have increased my blood pressure a bit but not by much because almost everytime they check it, mine is still in the low range. The slowness of speech and thought is also what I get with my blood pooling I believe (mine is 40% pooling just upon sitting up.....not even standing yet). My Pots doc is a vascular doctor so I don't know if I cardiologist is the person to order such a test. I know you also mentioned not living in the USA so I don't know what facilities you have or do not have near you. Just some thoughts......

[looneymom]

Clonidine will make you tired. My son cannot take it during the daytime hours. Do you have a doctor would check neurotransmiters? It hard to keep these things in balance if you are hyperpots. If you have too much GABA, you will also feel tired al the time. So if you were having trouble with fatigue before POTS, I might research the conditions that might cause fatigue because this could make your POTS worse. Hypoglycemia comes to mind, MONO virus, iron defiency. It's like looking for a needle in a haystack. If you are dealing with low blood pressure, this will also make you tired.

Are you able to exercise at all? When Tyler was, it did help with energy levels. However, he had to be careful on how much he did. Too much was not a good thing for him. A good physical therapist can help and make sure you do not over do it.

[dkd]

Have you tried a beta blocker?

I tried three different ones before I settled on one that didn't make me too tired. It definitely keeps my HR down so that my blood pressure stays more normal. But according to my TTT, my heart rate goes up and blood pressure drops, or visa versa, not sure which one comes first.

[bellgirl]

I was told Provigil is given to MS patients for fatigue, but my insurance company wouldn't cover it at the time (It was $8 a pill), but now I think there is a generic form. Some have tried Mestinon, usually given to myasthenia gravis patients for weakness, but that can increase B/P, so you may not be a good candidate for that, but since it's more normalized now with the Clonidine, it may be possible. I was put on Wellbutrin XL for libido, but it ended up getting rid of some of my fatigue, but then sometimes I still over do it, and suffer the consequences. It gives me more energy. I'm able to exercise, which helps with cardiac return and makes my heart function more efficiently, (I have MVP). I had a lot of trouble with dizziness/vertigo due to the dysautonomia and tachycardia, and that has almost completely gone away, so I'm able to do more without being nauseated all the time, although I still am motion sick at times.

[IceLizard]

If you have puffy, purple legs that means the blood is pooling in your legs. As a result your body produces adrenaline to combat the lower blood volume in your head, causing high blood pressure and a high heart rate in the second instance. In the first instance it seems you body adapts some to being upright and the heart rate lowers. Narrowing pulse pressure is common in POTS.

I have a similar reaction to your 2nd instance.

My doctor suggested Clonidine for the adrenaline surges and high bp, but that does not address the cause of the adrenaline surge which is the blood pooling when you stand. So, he suggested I pair Midodrine with it to constrict my blood vessels and help prevent the surges from being triggered in the first place.

He also gave me instructions for exercises to tone the muscles that help prevent blood from pooling. You can also try compression hose, but that would be uncomfortable in the summer.

Best wishes!

[DeGenesis]

Thanks go out to all of you. I will address each of your comments individually, but for now I have a bad migraine. Keep them coming! I really appreciate it.

[DeGenesis]

Well it turns out that my appointment is actually next Friday.

I am thinking of asking for midodrine. I have used stimulants (Adderall, Dexedrine, etc.) in the past with good success, and they work very similarly to midodrine, except midodrine does not cross the blood-brain-barrier. The problem is, as with the stimulants, it will worsen my already crummy peripheral circulation. The beta-blockers I have tried have done this. (Although I am keen to try Bystolic [nebivolol]).

I lowered my dose of clonidine to 0.1 mg b.i.d. instead of 0.15 mg. My blood pressure actually dropped and my HR increased, but I could think more clearly. I think you may be on to something with the clonidine-midodrine combo.

[Raisin]

Yes. I think that will be my next venture....may the force be with us.

[kitt]

Bellgirl, I just wanted to share that the neurologist I saw at Mayo is a prominent POTS researcher and she does NOT recommend Provigil or Adderall for pots patients. She explained that it acts like a 'choke' on an engine.

I also had to stop Clonodine because it caused too much fatigue, and I can take no beta blockers because they cause my BP to drop too low...80/40 and 70/50 etc...

Have an appt to speak to my Mayo neurologist and one of my questions is about meds. When I was there for ten days of testing six months ago she did not want to prescribe any meds until I got my sleep issues under control. I saw a sleep expert and I didn't need a sleep study, he could see my circadian rhythms had flatlined and he gave very specific instructions on how to get the circadian rhythm back to normal. An amazing process, and it worked so am now ready to start meds again.

Degenisis, you may have excellent results with beta blockers, or Mestinon, (if you're not hyperadrenergic) or Midodrine.

Good luck with this. Sometimes it's just a matter of trial and error.

K

[DeGenesis]

Are you saying that Mestinon is a bad idea if you are hyperadrenergic?

[kitt]

.

[DeGenesis]

Yes, that's the theory. Mestinon has helped a LOT of people on Dinet, but it's not recommended for people who are hyperadrenergic. Have you had catecholamine testing to determine if you are hyper?

When I was admitted to hospital, I had a 24-hour catecholamine urine test. I was told it was normal, although I have never seen the results. Problem is, I was laying down the entire 24-hour period. I sat up once and a while to use a urinal, but I never stood, so I don't know how valid the test was.

[bellgirl]

Thanks Kitt, I know some have tried Provigil here, but didn't like the side effects, so I never pursued that med. I can't take Mestinon, because of high blood pressure. I'm currently on several meds for that, so I'm not a good candidate. Wellbutrin XL has worked well for me. It has improved my fatigue immensely!!

[kitt]

Bellgirl, did you have any side affects with Wellbutrin? Is Zoloft in the same class as Wellbutrin, (I haven't researched it.)

Doctors who treat CFS used to use antidepressants as immune modulators. Don't think that's still a common approach, but I found I didn't tolerate most of them but did tolerate Zoloft. It's been over a decade since I took it but I did tolerate it. Just curious about side affects of Wellbutrin, if any.

DeGenesis, I understand your catecholamines were done via urine but for purposes of dysautonomia they're done via blood rather than urine. You may want to have them checked again. It's a very easy test.

[DeGenesis]

Is Zoloft in the same class as Wellbutrin, (I haven't researched it.)

Zoloft is an SSRI. Wellbutrin is sometimes said to be both a dopamine reuptake inhibitor (DRI) and a norepinephrine reuptake inhibitor (NR), but in reality its DRI properties are so weak that it is basically an NRI. It isalso a nicotinic acetylcholine antagonist, which is responsible for its efficacy as a smoking cessation aid.

Wellbutrin is often given in combination with an SSRI to restore libido and reverse emotional blunting caused by the SSRI.

The combination of Zoloft and Wellbutrin was sometimes nicknamed "WellLoft" by psychiatrists because of their synergy.

[IceLizard]

If I am not mistaken the 24 urine test is to check for pheochromocytoma. I had this done. But, it does not rule out hyperadrenergic POTS, that is a separate test.

[DeGenesis]

Thank you kitt and IceLizard for alerting me to this other separate catecholamine test. I live in the GTA, but I might travel to Buffalo to see a dysautonomia specialist there named Dr. Svetlana Blitshteyn. Maybe she can do this test.

[kitt]

Is Zoloft in the same class as Wellbutrin, (I haven't researched it.)

Zoloft is an SSRI. Wellbutrin is sometimes said to be both a dopamine reuptake inhibitor (DRI) and a norepinephrine reuptake inhibitor (NR), but in reality its DRI properties are so weak that it is basically an NRI. It isalso a nicotinic acetylcholine antagonist, which is responsible for its efficacy as a smoking cessation aid.

Wellbutrin is often given in combination with an SSRI to restore libido and reverse emotional blunting caused by the SSRI.

The combination of Zoloft and Wellbutrin was sometimes nicknamed "WellLoft" by psychiatrists because of their synergy.

That's interesting. I looked at the two separately and individually and I read what you had written. I also read that some people gained weight on Zoloft and some people lost weight. My recollection is that Zoloft decreased my appetite, so weight was not an issue. What I found interesting is something I read on a forum while researching Zoloft. One women wrote that her doctor told her that if she gained weight on it she should stop taking it, that it meant she was somehow allergic to it. Found that interesting because many people complained about gaining weight on it and many claimed they lost weight.

The two together make sense. It seems there is an 'emotional blunting' on Zoloft alone and the Wellbutrin added helps that. I don't understand that yet, but I don't want 'emotional blunting'.

I've had such a lousy response to most pots meds that I'm willing to try a SSRI and intend to ask about it. Thanks for sharing about 'WellLoft', an interesting combination.

Btw, before you decide to see Dr. Blitshteyn you might want to start a thread asking if others have seen her. I know of one person on Dinet who did see her and wasn't happy with the experience. She shared that information with me privately but perhaps she'll see your post and share with you.

Wishing you the best,

K

[gjensen]

DeGenesis, I did not tolerate Mestinon at all. I have autonomic neuropathy, but can be pretty hyper. Unfortunately, I swing from one extreme to another. I have become convinced that I would "present" a different presentation from month to month. I suspect that others would also.

Anyways, Mestinon put me into a "super hyper state". I tried it four times to be sure it was the drug, and all four times was a bad experience. I was disappointed because it helps some people. I was excited about trying it.

I have had a hard time knowing what to try next. I have started wondering about an SSRI.

[DeGenesis]

SSRIs are beneficial in hyperadrenergic POTS because they indirectly reduce adrenergic signalling. It takes some time for this to occur and things get worse for a few weeks before they get better. SSRIs also increase the standing vasoconstrictive response. They reduce neuroinflammation which is associated in CFS/ME.

It comes at a price though.

There is very little evidence that SSRIs cause weight gain directly, but they induce apathy in many people. I suppose that could cause dietary changes.

SSRIs also make it impossible to sustain romantic love. There are many articles on the internet about SSRIs and love. I do not recommend them to anyone in a relationship. Generally, they tone down all emotions, not just the bad ones.

Here is a good paper that summarizes this.

A sample from the paper:

"Most participants described a general reduction in the intensity of all the emotions that they experienced, so that all their emotions felt flattened or evened out, and their emotional responses to all events were toned down in some way. Very common descriptions of this phenomenon included feelings of emotions being ‘dulled’, ‘numbed’, ‘ flattened’ or completely ‘blocked’, as well as descriptions of feeling ‘blank’ and ‘ flat’."

http://bjp.rcpsych.org/content/195/3/211.full

If you are looking for an antidepressant that does not inhibit your personality, Wellbutrin is an excellent choice. It increases libido and orgasm intensity in most, does not impede emotions, causes a sense of energy and well-being, and can sometimes even increase motivation. Oh and it helps a lot of people with OI and POTS, depending on their subtype.

Don't take any of this as medical advice (I've been warned. ). This is just the culmination of my personal experience, anecdotes from others, and research accumulated from journal articles.

[DeGenesis]

Thanks for the warning kitt. I live in Toronto, Ontario and I'm looking for a doctor who can help me piece everything together. I have amassed a tremendously long list of diagnoses, which have accumulated since childhood and I KNOW that there has to be something to tie it all together. I just haven't found someone who has been interested in me or has enough skill. I'm pretty sure a smart doctor could boil it down to a couple of autoimmune disorders, as well as gut dysbiosis and MAYBE some kind of chronic infection (enteroviruses are looking like key players right now in the CFS/ME research community).

Health-care in Canada is not terribly, but it's not a wonderland either. Don't be fooled.

BTW, has anyone tried desmopressin? It's next on my list of drugs to investigate.

[gjensen]

I agree that this is true for a lot of people, concerning the SSRIs. It is also not true for a lot of people. There is no way to know, going in, where you will fit in. They do not have the same affect on every individual.

I will use the sexual side effects as an example. SSRIs are famous for them, but there are many examples of people that do not experience the same.

I was interested in Welbutrin early on, but am concerned about "sympathetic over activity".

[DeGenesis]

I agree that this is true for a lot of people, concerning the SSRIs. It is also not true for a lot of people. There is no way to know, going in, where you will fit in. They do not have the same affect on every individual.

I will use the sexual side effects as an example. SSRIs are famous for them, but there are many examples of people that do not experience the same.

I was interested in Welbutrin early on, but am concerned about "sympathetic over activity".

Mmm.. SRRIs reduce the intensity of emotions in a dose-dependent manner in all individual. They do this by inhibiting the serotonin transporter, which removes serotonin from the synapse. When neuronal synapses are saturated with serotonin, and there is nothing to remove it, there is less room for serotonin levels to go both up and down. I think it depends on your baseline emotional intensity and level of self-introspection. SSRIs are dosed too high for most and a dose of, say, Prozac 10 mg instead of 20 mg, will leave some of the serotonin transporter available to remove serotonin from the synapse.

[Raisin]

This is interesting. When I have tried SSRI's in the past, I felt very manic. My vascular Pots doc said that SSRIs can make pots symptoms worse but SSNRI's (not sure of the letters exactly) can help some people. I didn't ask the reasoning at the time because I wasn't interested in trying any of them at the time due to past experience. But, I am now wondering if I have the hyperadrenergic type of pots or something else going on that makes me just a bad candidate for any of them. I guess we are so similar yet our bodies reactions to things may be very different. Still, discussions like this are certainly helpful!