Spaciness - Treat The Sns?

[peregrine]

Kind of an odd question here. So, some of you might have seen me ask questions about spaciness (analogous to the depersonalization sensation one sees in psychiatry, but of different etiology - POTS-specific for me). So far neither my doctor nor I have managed to figure out what to do about it (I'm honestly not convinced she thinks it's a huge problem, but for me it is symptom #1 in terms of both frequency and severity/life impact).

I'm pretty sure that the spaciness is specifically due to the upregulation in my sympathetic NS (which the doctor diagnosed based on my TTT, we haven't done standing norepinephrine or anything similar), since it started when I started taking Cymbalta (which plays with norepi reuptake in the brain). Several months later (after a 12-day road trip with very little walking) is when we first started noticing the tachycardia, nausea, etc, although I've apparently been pooling for much of my life given memories of blotchy legs in the shower. My theory is that pooling has been happening for a while (some peripheral denervation and maybe connective tissue stuff), then Cymbalta triggered a hyperactive SNS, then some mild deconditioning triggered the overall POTS.

So far beta blockers (atenolol and propranolol) haven't treated the spaciness; going on or off Cymbalta hasn't; diltiazem (calcium channel blocker) hasn't; pyridostigmine hasn't (although it's improved things otherwise, like pupillary function, standing tolerance, and fatigue!); exercise hasn't (worsens it slightly which might be consistent with an SNS etiology). My ANS neurologist suggested I look at cognitive-behavioral techniques, but the therapist and I concluded today that they're not going to help (and don't exist for non-anxiety-related spaciness anyhow) - the idea is that if I can't think due to low blood flow to the brain/sympathetic overdrive, trying to do mindfulness techniques isn't going to work. The therapist also thinks that my overstimulation, especially on large crowds of people, is probably also SNS in origin - the idea being that large moving patterns and a "oh no, lots of people, need to navigate now, howwww?" reaction trigger the SNS into fight-or-flight mode, and then you overstimulate.

My mental list of tricks to try next are a gluten-free week followed by a sudden upswing in gluten (to see if that helps) and asking the neurologist for a sleep study (to see if it's related to my sleep, although that's unlikely given the sudden onset while I've had insomnia for years), in that order. ANS neurologist thinks that we aren't going to try clonidine for now (unclear as to why).

What do you guys think? Is clonidine or a similar SNS antagonist (sympatholytic) worth a shot? Has anyone else had this type of SNS-spaciness link? Other things to try? Sorry, kind of at my wit's end here...

[issie]

A few ideas. Lyrica like Cymbalta (SNRI) - could be affecting your brain. I've known of some people on SSRI's that have totally lost themselves and their personality. The only way to describe it is------they sort of flat line. They don't have a whole lot of downs, but neither are they up. They are just there. I don't know if this is what you are considering as spaciness. Mestinon also messes with brain chemicals and function as does seroquel - I'm not sure about some of your other meds. But, you are taking a lot of things that tweak and work on receptors that affect brain function.

I would suggest your finding out if you have high noriepi levels - I do and have those anxiety type feelings that come with the swings with that. I have had issues with crowds too and lights seem to mess me up. I am at the moment on clonidine and it has really helped those feelings that the ramping up of the heart rate that the noriepi creates - out of the blue. The only issues I'm having is I'm more tired and can not stand for as long - dizziness is a good bit worse. I'm also having issues with edema. But, as for the way I feel - I'd take the lethargic, tired and dizziness over the severe hourly surges that the noriepi was causing. It's nice to not feel like my heart is going to beat out of my chest and the anxiety feelings that come with it. So, for now - I'll continue with the med and see what happens. Maybe, will need to add something else to it later. Have a call into the doc about the edema - it is the most alarming thing at the moment.

Issie

[peregrine]

Hmm - I had thought Lyrica was affecting different receptors? My rheumatologist says it affects an entirely different part of the pain pathway in the brain, although it doesn't seem to be doing much so I may taper off of it soon. For me the spaciness is an entirely new development - I've been on and off various meds, the only two that have been consistent the whole time that I've had spaciness have been Lamictal and my birth control, and I've been on both for many years before this whole thing started. So I'm pretty sure it's not all the various tweakers (although I agree there are a lot!) unless one of them has shifted something permanently the way Cymbalta seems to have. In terms of personality - thanks for clarifying! Not so much a flat line, more a feeling of being out of it when I get up and walk around, mostly gone when I sit but still there at times. Certainly I have moments where I'm entirely unspacey but they are usually sitting at home on the weekends.

Sounds like maybe I should ask the neurologist about the norepi level, then? Just lying down, or standing too? I'm glad to read about your experiences with clonidine both here and on other topics - thanks so much for sharing your thoughts about it! - super helpful. Hope your edema resolves soon, that's definitely not a fun thing. (my only brush with edema was positive in that it forced my doctor to take me off diltiazem, which I wanted off of, but *sympathy* for your edema situation!)

[issie]

You need it checked both lying and standing - that will determine if you're in the HyperPOTS catagory.

Maybe do some research on your meds and see what they all work on and affect - it might point you in the direction of what could be contributing to your spaciness. Some of it is probably just the brain fog stuff that goes along with POTS and we all have a certain measure of it - sometimes worse than other times.

Issie

[peregrine]

Thanks! Good to know. I'll poke her about that next time we talk.

Regarding the meds, I just updated my list-o-neurotransmitters - here's the current batch:

sodium channels - Lamictal blocks

calcium channels - Lamictal blocks, Lyrica blocks

glutamate - Lamictal decreases, Lyrica may decrease

GABA (indirectly) - Lyrica decreases, but very weakly and only indirectly

beta-1 receptors - propranolol blocks

beta-2 receptors - propranolol blocks

acetylcholine - pyridostigmone increases (blocks degredation)

I've been on the Lyrica and propranolol since January of 2012 - doesn't seem to have affected the spaciness at all. Lamictal since summer of 2006. Pyridostigmone since last week. Hmm. Normally I would say it's all cut and dried, but after the Cymbalta triggered this whole mess (or so it seems) I'm less comfortable saying that any more!

nothing particularly GABAergic, opioid hitting (Lamictal does only in passing), etc that I might expect to cause spaciness, but who knows. Definitely some brain fog going on; got to love the brain fog! I just don't like the brain fog where I step into a road with a car on it without looking, or looking but not connecting it to "that car might hit me." Not fun times :^)

[issie]

Have you compared Lyrica and Cymbalta?

Issie

[heathmcev]

Hi peregrine,

I'm on, or have been on, everything you've listing. I also get the feelings of detachment at times, and associate them with pots as I only seem to feel like that when upright. It happens to me in both quiet and stimulated environments. Just as a point of interest, I'm going off lamictal in the next week or 2 for the first time since 2006...just finished weaning down. I'll let you know if I experience any change in detachment feelings once it's cleared my system, although I doubt it plays a part. You never know tho!!

Dizzyde

(null)

[ramakentesh]

spaciness - inadequate cerebral perfusion

[peregrine]

Issie - from the neurotransmitter point of view, Cymbalta hits serotonin and norepinephrine, and (to a very tiny degree) dopamine. Lyrica does, according to some sources, hit noradrenaline to a degree, but not significantly and not in the central nervous system (details - the prescribing info sheet discusses animal model references to the noradrenergic pathways below the brainstem only, which shouldn't be linked with CNS issues as a result; Wikipedia says it may decrease the release of noradrenaline levels, while Cymbalta is a reuptake inhibitor, so effectively increases norepinephrine; they're almost opposite there). The norepinephrine reuptake action in Cymbalta tends to give me insomnia and overall muscle tension; Lyrica is almost the opposite in that regard. So, hopefully at least! they shouldn't be doing the same thing (although, who knows with this stuff, right?). I was off of Cymbalta (and hadn't started Lyrica) the entire month of September and things didn't improve at all. I will probably taper off the Lyrica soon, since it doesn't seem to be doing anything for the pain.

Dizzyde - thanks! Keep me posted :^) Wow, it really is starting to sound like we're clones.

Rama - would that make it a pooling problem (causally), then? This feels different from lightheaded-almost-going-to-faint-ness, but it's hard to say what the difference is. Sometimes I get both. The beta blockers and pyridostigmine haven't helped with this, but they did with my overall standing tolerance. Hmm. I'd love to hear more if you've got theories!

[issie]

That's good to know about the differences in the two meds. I know someone who tried both for FMS and could take the Cymbalta but not the lyrica. So, it just shows that what one person can take - another one can not. I've actually known more people to stop the lyrica then have been able to take it. They didn't feel that it helped their pain that much.

Rama is saying we don't get enough blood to our head and that is a problem with nearly all of us POTS people. We don't get the blood flow back to the heart or head correctly and that causes issues with brain fog. It's trying to figure out how to deal with all the issues we have - but, increase the vascular return of our blood to our hearts and head with enough volume to help us stay upright, functioning and without foggy brains. Figuring out how to do that----now that's the problem. If we lower NE levels too much and don't have the pumping action of our hearts to counter-act some dysfunction in our vascular system - then we will have more pooling and less blood flow to our hearts and head. Then you get more dizziness and more brain fog. But, like Rama said on another post - our hearts and our heads are not immune to the effects that too much NE creates and that causes us issues too. It's a fine line and a fine balance to try to create for ourselves - to where we can function and be able to handle the consequences of what it may take in order to function. (Rama - hope I'm following your line of thinking)

Issie

[ramakentesh]

Cymbalta is an SNRI? Increased cerebral NE has very different effects to peripheral. But as medications Lyrica and Cymbalta are not alike.

[peregrine]

Rama - yup, an SNRI (used for both depression and chronic pain - in me it worked great for both, minus the jaw clenching side effect that made me stop taking it, darn it). Curious, since I don't know the difference - how do increased cerebral and peripheral NE differ - what are the effects? (thanks!)

[peregrine]

Just as a brief report back - trying the gluten free for a week and then gluten overload trick didn't do anything; I did worse without gluten overall, though no response for the spaciness. Going to drop my doctor an email and ask her what the next thing to try is... I kind of feel like I'm pushing her on this but (a) she's leaving for another hospital this summer and ( I want things to improve, darn it :^)

[issie]

One week isn't long enough - you may not notice a difference until one month. Give it a little longer. It takes 3 weeks to change habits and one day to undo all the good of staying off of something. I've definitely felt lots better since being off wheat. You do in fact feel worse at first because your body craves what it doesn't need. If you seem to be going through withdrawal type symptoms - good sign you don't need it, with foods.

Issie

[pat57]

I sure have had what you describe, I think you POTSIE'S go up and down in BP. I have

NCS and OH so I go down and down. My best freinds to ward that off are compression stockings , salt and water.

There are aroebic compensitory movements that can help. I forget the

proper term. Someone will know. Anyway learn them and use them.

For example, running in place- it will bring the BP up.

good luck

[peregrine]

Issie hmm. I'd been told by the nutritionist I saw in the past for joint stuff that a week was enough, but it might be worth another (longer) shot. Thanks for the advice! I am a little confused, though - if you do have withdrawal symptoms, then you don't need the food? Could you explain a little more if possible?

Also - does anyone know of any way to monitor blood pressure while on the go, analogous to the way you can get heart rate with a Holter or a heart rate chest strap/watch? I'm curious to see what my BP does when I'm actually walking/spacing, and we only have the TTT data which says that I fluctuate like crazy. I'm hoping better situational data might help? The stockings, salt, and water have helped my standing tolerance a lot but haven't done anything for the spaciness. Troublesome :^)

[peregrine]

(partner and I are coming up with a list of things to snack on for a one month period to test gluten again - my big issue is that goldfish, pretzels, and saltines are my method of dealing with nausea, so I need to find alternatives for those first)

[issie]

Yeah, when I did my food elimination diet the nutritionist that I was seeing told me that you will actually CRAVE things that you probably shouldn't have. It is like an addiction and your body wants it for some reason. Like a drug addict wants drugs. She had me do a rotation diet. You can have all you want of an okay food all one day but can't have it again until the 4th day. I had to keep records really well as to how what I ate made me feel and do it for several months. That way your could look back on things and see if there were any patterns of problems with other foods. Not only was I to stay off of wheat and gluten (barley, oats, rye) but was also supposed to stop any dairy and sugar. Talk about hard. It really does make a difference though. Then at the end of the time - you were to slowly add only one food back and see what happens. When most people try to add back these things - they will notice a big difference of unwellness. Believe it or not, I did really good on the diet for a couple of years and then went back to my bad habits and Yes - got much worse. So, now I'm back to TRYING to do this again. I'm not perfect - but, so much better with my eating. This doc told me though. . . .would you put a tiny little piece of poison in your mouth and think you will be okay. She said that anything we have reactions to our bodies will react as if it's a poison - if we're tuned in enough we will notice it. She said people wonder why they have a headache or their joints hurt, or they have gas, or bad breath or their stomach is swollen etc.....she attributed it to foods.

There is a blood pressure test that Mayo was going to do on me and you would have to wear an actual cuff for hours to days and they would see what your bp was doing under all sort of daily living. You can have a test done like that.

[pat57]

this is what I meant...........

"Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one's legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, although some patients report an increase in symptoms after squatting."

[peregrine]

The countermaneuvers, stockings, and salt/water do definitely help me maintain a longer standing time and keep me less lightheaded, but they don't do anything for the spaciness per se - it appears to be unrelated to the lightheadedness (in that it's always present, and the lightheadedness isn't always present and, if present, is addressed via countermeasures etc).

Issie - thanks for the info! Wow, that sure is one restrictive diet. The nutritionist I talked to (who worked with connective tissue and joint issues folks mostly) said to try eliminating gluten, dairy, and sugar, but not all at once like yours suggested - that's impressive! I found with the week off of gluten that it was actually very easy not to eat it cravings-wise, surprisingly so (even resisted chocolate chip cookies that came out of the oven in front of me), but that I felt worse without it. Hmm. Probably worth a longer trial, definitely. About the blood pressure monitoring - that's good to know. The TTT monitoring they did on the tip of my finger (with a tiny cuff, not just the pulse oximetry) seemed neat but didn't look usable beyond the room. I wonder if this is something my doctor would have thoughts on... hmm. Should ask her.

[HopeSprings]

Curious - does laying down help the spaciness at all? Spaciness is my worst symptom too.

[peregrine]

Yup, although it isn't an immediate fix; I don't tend to use it during the day to treat it because it interferes with my work, but in general lying down (or just "flopping" as we call it at home) is helpful.

[HopeSprings]

Yes, me too - which is why I think poor blood flow to the brain is accurate. I really cannot think of a medication that would improve this besides medications that counteract pooling - for example Midodrine. Have you tried that? I did and reacted poorly to it, but I can understand why in theory it should work.

[issie]

I read an article "somewhere?????" that vitamin C is helping with getting blood to flow better and also to the brain. I'll have to see if I can remember where I read that. (I read stuff from all over the place. It could have been in a Life Extension magazine.) It can however lower your blood pressure - so you need to be careful of how much you use.

Issie

[peregrine]

I haven't tried midodrine; the doctor hasn't brought it up the last few times, unsure as to why. I should clarify that, while sitting/lying down helps some, it's not a total fix; I am somewhat spacey much of the time these days, it's just that it's always while standing and only sometimes-much of the time while sitting. The only reason I'm hesitant to treat it via avoiding pooling entirely is that doing anything else that helps prevent pooling (stockings, countermeasures, salt, water) doesn't do anything for it. But *shrug* who knows?

(issie - neat! I do like my vitamin C, as it happens, although I haven't noticed any effect in particular)