Teach

N and Fainting

24 posts in this topic

I have passed out more times than I can count. As I've gotten older, I can tell when it is coming on and usually avoid passing out completely. I have read some things about people with N and POTS. Anyone out there know if they are connected or comorbid? How do you go about getting tested? Would I talk to my neurologist or gp?

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Do you have N+C? What's your blood pressure usually?

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Teach

You should seek counsel of a Neurologist to be tested for POTS (postural orthostatic hypotension syndrome) generally this is determined by administration of a head up tilt table test:

The head-up tilt table test is a way to find the cause of fainting spells. You lie on a bed and you’re tilted at different angles (from 30 to 60 degrees) while machines monitor your blood pressure, electrical impulses in your heart, and oxygen level.

Just so you know there are Neurologists who do not place much emphasis on the results obtained nor do  they necessarily believe there is such a thing as POTS. At any rate the symptoms and signs are similar in some aspects only. Cataplexy occurs in response to emotional stimuli such as anger, laughter, grief etc. The fainting episodes associated with POTS are not associated with any emotional stimuli and may occur at any time. Sleepiness is present in both disorders although the sleepiness associated with Narcolepsy is much more severe.

Jason poses the appropriate question, have you been diagnosed with narcolepsy with cataplexy and by whom

I wish you the best of luck

 

 

 

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Teach

So I see on another forum that you have been diagnosed and were actually prescribed xyrem for awhile is that correct? Did these episodes increase after you stopped the xyrem by any chance? Since you can almost predict when they are going to occur are they associated with any type emotional event?

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10 hours ago, Jasonm said:

Do you have N+C? What's your blood pressure usually?

No cataplexy that I'm aware of. I've also been on Effexor though since diagnosis, which could mask it.

My blood pressure is usually around 120 or 1teens over sixties or seventies. 

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3 hours ago, Natdoc said:

Teach

So I see on another forum that you have been diagnosed and were actually prescribed xyrem for awhile is that correct? Did these episodes increase after you stopped the xyrem by any chance? Since you can almost predict when they are going to occur are they associated with any type emotional event?

No,  they weren't affected by Xyrem. 

They tend to happen at this point in my life during medical appointments.  If I get nervous or anxious it makes it worse, but sometimes even when I feel chill it comes out of nowhere.  I wish I could control it!  It is so embarrassing. I start to feel lightheaded,  my ears ring, my field of vision gets smaller and things go gray,  and I start sweating profusely. The last time it happened I was at the eye doctor! Which is why I'm dreading to go tomorrow to a Neuro opthamologist that my doctor referred me to.

When standing up after bending down or sitting on the floor I get lightheaded and sometimes off balance, my ears ring or things go gray, but I've never actually passed out from this. 

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Sounds more like presyncope than cataplexy. Could be caused by an arrhythmia rather than pots. I think pots would be more symptomatic if you noticed it from changes in posture. Is this a daily occurrence? Is your heart racing, pounding, etc when it occurs? Sometimes you can't feel an arrhythmia. 

I'd see a cardiologist. What other medication are you taking? Effexor can contribute to arrhythmias as can any stimulant. Sometimes they are dangerous but often times they are benign. 

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5 hours ago, Jasonm said:

Sounds more like presyncope than cataplexy. Could be caused by an arrhythmia rather than pots. I think pots would be more symptomatic if you noticed it from changes in posture. Is this a daily occurrence? Is your heart racing, pounding, etc when it occurs? Sometimes you can't feel an arrhythmia. 

I'd see a cardiologist. What other medication are you taking? Effexor can contribute to arrhythmias as can any stimulant. Sometimes they are dangerous but often times they are benign. 

I agree! I think it is a vasovagal response. 

 In addition to the Effexor, I just started Baclofen. I also take Adderall and Gabapentin.

The good news is that I had no issues today at the opthamologist... minus the fact I could barely keep my eyes open because of the anxiety PRN my doctor gave me to try! Now time for a nap. 

Thanks!

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1 hour ago, Teach said:

In addition to the Effexor, I just started Baclofen. I also take Adderall and Gabapentin.

And you're still alive? That's quite a combo - do be careful! ;)

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Teach

May I ask why the visit to a neuro opthamologist?  what does your physician suspect? Was there papilledema present on an exam? Have you had an MRI of your brain that was suspicious? There are so many things that are associated with these symptoms and since none of us can you it really is all guess work

I agree completely though with HBr please be careful with so many medications

Interactions between your selected drugs

Major

amphetamine and venlafaxine

Applies to: Adderall (amphetamine / dextroamphetamine), Effexor (venlafaxine)

Talk to your doctor before using venlafaxine together with amphetamine. Venlafaxine may increase the effects of amphetamine, and side effects such as jitteriness, nervousness, anxiety, restlessness, and racing thoughts have been reported. Combining these medications can also increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea. Severe cases may result in coma and even death. You should contact your doctor immediately if you experience these symptoms while taking the medications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

MODERATE

baclofen and venlafaxine

Applies to: baclofen, Effexor (venlafaxine)

Using baclofen together with venlafaxine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and her

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7 hours ago, HBr said:

And you're still alive? That's quite a combo - do be careful! ;)

I wish I wasn't on so many meds! I was diagnosed with GAD in 2009. I was on and off meds for it mostly because I tried to find excuses not to be on any. Years later I started Venlafaxine and things got better, so I  stuck with it. I started seeing a neurologist for migraines that I was having, nearly half the days in a month.  I tried some preventative meds, but not much worked.  I eventually started Gabapentin for pain relief and the added benefit of improved mood.  I have wanted to get off this, but both my psychiatrist and neurologist day to stay on it because it's so benign,  and that even though it doesn't seem to make much of a difference, I'd notice it if I went off. Then came the N diagnosis in 2014. I started Adderall which was sufficient until about 6 months ago, so I started Xyrem, which made my anxiety go through the roof. I quit Xyrem after 2 months bc of all the side effects.  Now I have just been on Baclofen for a week, but have been very tired! I wonder if this, coupled with the Venlafaxine is a bad combo. I wish it wasn't all so complicated. Thanks for the concern.  I'll be careful! 

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5 hours ago, Natdoc said:

Teach

May I ask why the visit to a neuro opthamologist?  what does your physician suspect? Was there papilledema present on an exam? Have you had an MRI of your brain that was suspicious? There are so many things that are associated with these symptoms and since none of us can you it really is all guess work

I agree completely though with HBr please be careful with so many medications

I'm not exactly sure why the neuro opthamologist referral... light sensitivity and migraines I think.  All Kris has have been  clear.  I did just have an REG that showed mild focal slowing in the right temporal lobe.  He said he isn't too concerned though bc the MRI was clear. Thankfully the neuro opthamologist didn't find anything abnormal today. 

Thanks for the care and information.  I think I've discussed the interactions with my doc before, but will bring it up again at my next appt. 

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@Teach if you're primarily suffering from anxiety, effexor, while effective, isn't always the best to combine with adderall since both increase norepinephrine, which in turn can cause hypertension or hypotension, tachycardia, etc. It's not necessarily a bad combination but, it does need to be monitored. If the presyncope only began after adderall, that's probably indicitive of a problematic interaction.

My personal experience on both medications was that the effexor combined with adderall made me unbearably fatigued. I had no drive. I can't really tolerate SSRIs or SNRIs though. Stopping effexor was pretty unpleasant but well worth it long term. Effexor has been linked to postural hypotension and some studies found quite frequently. 

I think regular exercise, particularly if vigorous, is absolutely the best treatment for anxiety. Research tends to show this as well. 

@Natdoc I really don't understand those dire sounding serotonin syndrome interactions with amphetamines on some drug interaction checkers. While possible I guess, Adderall has very little effect on serotonin. I'd be more concerned about norepinephrine toxicity with that combination but they don't even mention that lol. Now tramadol on the other hand, and you're rolling the dice. 

 

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Hey Jason

Ya I agree, however I generally leave the interaction checking to either Epocrates or our institutions pharmacist, there are way too many drugs and interactions for me to keep up with alone. Whether serotonin syndrome or epinephrine response, neither is going to benefit the patient. As you are aware I am not a proponent of most pharmaceuticals instead I rely on Fresh air, Sunlight, Exercise and adequate sleep. I swear to  you I see people every day who are taking 20 different medications, sometimes 3 or 4 for the same malady, I have no idea how they know what works for them and what does not (neither do they by the way). 

The most difficult part of treating sleep disorders is to try and get folks to understand that there is not a pill for everything.

Unfortunately I spend as much time preaching the same sermon to physicians as I do to the patients

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17 minutes ago, Natdoc said:

I rely on Fresh air, Sunlight, Exercise and adequate sleep.

@Natdoc: I'm with you 100% on that, but isn't the very essence of N fragmented unrefreshing sleep at night combined with, or associated with, daytime sleep attacks? So, if Xyrem is off the table, and pharmaceuticals such as Trazodone and others fail, how do we get that 'adequate sleep'? I have tried to practice good sleep hygiene and some form of CBTi, but I cannot find a working solution. In my case, refreshing daytime naps seem to be impossible due to my genetics. Your insights are appreciated always. :) 

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HBr

This may sound a little strange but I will tell you what I tell others along with what I have mentioned above I recommend Lg amounts of Vit D supplementation (5000u per day), Ashwaganda for the immune support, and a combination of Passion Vine and Valerian root for increasing delta sleep and defragmenting sleep. Yes it does take a little longer to experience the positive effects but there are very few adverse events experienced and for most folks it is every bit as effective as pharmaceuticals.

Please keep in mind I am not against medication but I also do not suggest reliance. I happen to be a big fan of neurontin and of xyrem, however I have found very few other medications used for sleep to be effective of course that is only based on twenty years of experience and it is my opinion only. and believe me I have heard the term Quackery more times than I can count, although if the patients benefit who cares right?

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3 hours ago, Natdoc said:

I recommend Lg amounts of Vit D supplementation (5000u per day), Ashwaganda for the immune support, and a combination of Passion Vine and Valerian root for increasing delta sleep and defragmenting sleep.

Sounds like a great list and I am familiar with and use, or have used, most on that list with the exception of Passion Vine. I really would like to get a full list of dosage amounts though and I certainly will add the items I lack as soon as I can find a source for them. Thanks much!

BTW, the only 'Quack' that concerns me is a certain 'Duck' that runs an otherwise great country you may be familiar with. ;)

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It's never quackery when it works and everything is worth a try in the search for a functional life. Somewhere on this board is a statement that I made to Hank... "I'd stand on my head for an hour a day if I thought it would help". Unfortunately that would probably just play hell with my glaucoma :( 

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@Natdoc yeah I think everyone definitely know my feelings on exercise and sunshine lol. I think a lot of the quackery claims stem from the lack of unbiased well designed research on many natural treatments. I've never had any luck with herbs except kava. 

I wish the natural community would band together and take a harder stance on therapies that cure everything and have no scientific basis *cough* cranial sacral adjustments and instead emphasize the legitimate stuff. 

@HBr ever consider getting an activity/sleep monitor? 

 

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41 minutes ago, Jasonm said:

cranial sacral adjustments

Is that something like standing on your head for an hour? Now that's an act I'd like to see a furry, four-footed critter performing. :P

41 minutes ago, Jasonm said:

@HBr ever consider getting an activity/sleep monitor?

Yeah, right after I replace my aging iMac, maybe acquire an iPhone, and then figure out how to pay for both. Oh, and then there's that nice little shack out in the country that I've had my eye on, but then the issue there is more about an unreliable brain and associated emotions. :( 

Seriously though, what benefits would I derive and from which device? I'm currently off all Rx meds except TRT (recommended by Dr. J. :)).

Last night, I took 3 pills of Jamieson's Valerian and a Zinc Lozenge for good measure. For one night, I slept much better and the benefits are obvious today, although a sleep attack may well arrive at any time (god, how I hate having that specter following me around all the time!).

I should mention that I'm also now into pro and prebiotics at bedtime. Basically, a bowl of probiotic yoghurt with fruit and natural honey, topped with prebiotic inulin (powdered jerusalem artichokes, aka sunchokes). Seems to be helpful - there was a BBC docu recently about an insomniac GP who found prebiotic supplementation quite helpful, and I read somewhere that probiotics are supposed to work on GABA.

 

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Oh I just find the sleep trackers helpful for CBTi. My biggest issue with CBTi and those I've helped with it has just been getting people to do the damn thing right lol. Like I'll get a message, I tossed and turned in bed for 4 hours before falling asleep... And I'm like uh that's a huge no for CBTi and worsening the sleep problem. When you see it in an activity monitor it

a. Allows you to self address sleep schedule CBTi compliance

b. Allows for you to share the results with others.

c. See how sedentary or active you actually are.

According to mine, my sleepy ass is 88% more active than most people in my area. 

Was your T that low? And how's the break treating you? 

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HBr

When I use herbal supplements I use liquids, I order mine from GAIA herbs, The dosage for valerian root is 1/2ml added to a drink or tea 1 hour prior to bedtime, in 1 week increase to 1ml. (1ml =333mg valerian) For passionflower vine the dosage is the same 1ml (passionflower vine is 500mg/ml).

For tea I use Reishi mushroom tea add the valerian and passionflower to the tea and relax. Some find the Reishi tea alone works tremendously well.

simmer the herb with 400ml water for 20 minutes, when cool add honey and liquid herbs,Reishi mushroom has a bitter taste. In traditional chinese medicine it is a popular anti aging drink, however it is excellent for insomnia and promoting delta sleep.Modern research shows it also has a calming effect along with pain relief.

Ashwaganda liquid extract (300mg/ml) add 20-30 drops to your morning glass of water. Make sure the ashwaganda comes from india or Sri Lanka

Hope this helps

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@Teach: Sorry about hijacking your thread. My mother used to faint at the sight of blood. She didn't do well with high temperature and humidity either. I hope you might find something useful in this discussion of natural remedies.

@Natdoc: Thanks! I look forward to getting this regimen in place. I was wondering if the Ashwaganda might be helpful for sleep attacks? Or might there be something else for this that you recommend?

3 hours ago, Jasonm said:

Oh I just find the sleep trackers helpful for CBTi. My biggest issue with CBTi and those I've helped with it has just been getting people to do the damn thing right lol. Like I'll get a message, I tossed and turned in bed for 4 hours before falling asleep... And I'm like uh that's a huge no for CBTi and worsening the sleep problem. When you see it in an activity monitor it

a. Allows you to self address sleep schedule CBTi compliance

b. Allows for you to share the results with others.

c. See how sedentary or active you actually are.

According to mine, my sleepy ass is 88% more active than most people in my area. 

Was your T that low? And how's the break treating you? 

My ass doesn't concern me, just my 'heavy, unmotivated, and unhappy head' after EDS/sleep attack sets in - what a useless feeling after what starts out to be a perfectly hopeful productive day! :(

My T is fading away to almost nothing even after 3+ weeks on the gel, but I'm using a super low dose due to my GP's (misguided, I believe) concern about prostate cancer. Recently, the dose has been doubled, but is still half the recommended adult dosage. It does seem to help me get through the day and perhaps helps a bit with sleep. I think I may need to get my estradiol checked too, in case that is interfering with the T uptake?

I do better without Rx meds - caffeine and dark baker's chocolate, and exercise and diet, get me through the day, but it's a daily battle. Sleep is better with the regimen I posted about above.

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