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mancmm19

Talking And Conversation Cause Lightheadedness And Head Pressure

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Hello Everyone! I haven't posted in a while because I seemed to find my new "normal" for the past 3 years and was able to get through each day with a modified lifestyle. However, I came down with a very bad virus in the beginning of October which caused a POTS attack and I've been in a flare up ever since. I am now more ill than I ever have been and am trying very hard to get through this. I've been forced to move in with my parents to help take care of me and am basically house-bound. Being I cannot leave the house much, I have had a lot of visitors or people calling me on the phone, which leads me to one of my worst triggers. I know I created a post about this years ago but this symptom is now one of my most debilitating and I'm hoping that y'all have some advice!

I cannot seem to hold a conversation without getting very symptomatic. It's usually triggered by my talking but then, even when I stop talking, it's like I get overstimulated from listening to the other person. When I talk, I start to get a building pressure in my head, followed by internal tremors, chills, and teeth chattering. I begin to feel like I'm going to faint so I then need to lay completely flat and silent. With friends and family, I'll tell them I can't talk (they know the drill) but then it's as if I can't even be involved in the conversation any longer. Even if I don't speak and just listen, I'll feel very "overstimulated" (I guess?) and get the same symptoms. I'll need to break eye contact and I find myself doing things like checking my phone or anything I can do to distract myself until the conversation is over and I can excuse myself.

This sounds weird, but im pretty sure the look on my face even changes. It's like I lose the ability to maintain composure and act normally. The only thing I can imagine relating it to is feeling like I'm going to have a seizure (I've never had one before.)

Does anyone else experience this?! This used to bother me sometimes but now it's to the point where my mom needs to talk to the doctors for me so I feel even more symptomatic and my friends and family know conversation is limited. Kind of sad feeling like I'm also losing the ability to express myself in addition to everything else I've lost control of :( Laughing has always triggered the same symptoms but I've learned to master a quiet giggle :)

I should mention that I'm on .2mg of Florinef and .25 mg of Xanex as needed (this xanex seems to help a tiny bit sometimes but definitely not enough.) Thanks for taking the time to read this and please let me know if I'm not alone!

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Hi Michele, sorry you re having a harder time than normal. Sadly I too get like this. Mine is the CFS I have had for 12 years. Lots of the time I can not even take in a conversation. I can't hold a conversation and even listening is too much. I really struggle on the phone and am generally in need of a lay down afterwards. Our bodies just tire so easily. Only yesterday my mum was talking to me as I lay on my bed and I barely had the energy to reply or take in what was said. I needed absolute quiet so my body had no stimulation. I get where you're coming from.

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Hi @dizzyallie, and thanks for the prompt reply! ME/CFS has always been thrown around in conversations with my doctors but I was always told that there is no test for it and it's just a "catch-all" syndrome when there's no easy diagnosis. Sometimes doctors are so close-minded! If you don't mind my asking, how were you diagnosed with Chronic Fatigue? I've often wondered about it being a lot of the symptoms overlap with Dysautonomia and Lyme. Are you on any type of treatment plan to help with your symptoms?

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Talking requires deeper and more frequent breathing. I became the question asker and listener over the years.....its a real help in social situations! If or when people actually and really want to know about me....I make the time and breathe slowly. These encounters are only with people who understand my physical condition.

I am sorry this is happening to you ...but, you can adapt, improvise and improve....though it may take much time.

I learned from a retired minister to "always be tellen the truth, but not always be tellen it". That means, its ok to pass off your symptoms to those you don't see frequently, but you might want to inform those who really love you.

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CFS/me is currently getting a lot more credibility. There are set criteria that must be met. I think it is on the I.O.M site. Plus it is in the process of being called systemic exertion intolerance disease. They are finding blood markers as we speak. Mine began after major surgery and has left me almost house bound. I have pots on top and get told a dysautonomia component. It's an awful thing. I am in Australia btw. Was diagnosed by rheumatologist sand an immunologist after bloods ruled out lupus.

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Oops. Unfortunately there isn't much in the way of treatment. But of late promising research is coming out. I think if you type in iom report on systemic exercise intolerance disease. You willl get some idea.

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Hello Michele,

I am so sorry to hear you are undergoing this terrible thing!! I personally can add the following from my personal experience:

I had EXACTELY what you describe for about 5-6 months in spring of 2014, when my POTS was at its worst ever. I simply couldnt lead and follow a conversation. No listening and no talking without getting symptomatic within minutes. Neither person to person nor on the phone. The symptoms I got were strikingly the same as yours: At first lightheadedness and a strange feeling of being "overloaded" in my head, very soon followed by heavy internal termors, extreme "nervousity", severe chills and teeth chattering! I too had to avoid eye contact. I had to excuse myself from conversations so many times. At some occasions I wasn´t even able to talk to docs in hospital für 3-4 minutes without getting theses symptoms. Talking/listening made me feel "overstimulated" in general. As a consequence, I couldn´t watch TV or listen to the radio - just the same symptoms within minutes....

Luckily, these symptoms went away when my POTS cleared up slowly since fall 2014. But I still feel that conversations longer than 2-3 hours could make me symptomatic in that particular way (though much less intense). And it still gets better and better now.

Last but not least, there´s something you mentioned and that caught my attention immediately: You say taking a small dosage of xanax sometimes helps at least little bit. I too was taking (and finally tapering) a benzo. I first took xanax then changed to diazepam and finally tapered that slowly. Exactely parallel to this, my POTS flared and especially the terrible conversation-thing started... So, my idea: Did you change your dosage of xanax recently? Or could it be that you are actually in "tolerance withdrawal" (=taking the same dosage as usual but actually your body would start to need more...?). Xanax in particular is a benzo with a very short half time, thus you may be getting into "interdose withdrawal" regularly.

I actually emphasise this benzo thing, because your symptoms don´t seem particularly typical for POTS, but rather sound strikingly like what people experience who withdraw from benzos - you can read literally hundreds of experiences exactely like yours on benzo-forums (like benzobuddies.org f.e.). One of the worst symptoms the members report is the inability to lead a conversation, followed by the symptoms you describe. In addition, tapering benzos can flare up (or even trigger for the first time!) POTS/dysautonomia. So you may look into this issue as well...?

Anyway, this symptom will go away, don´t worry!! I send you much strength and energy!!

Best wishes!!

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I have the same problem with conversations, even on the phone. It's so frustrating how rotten a phone call can make me feel, and I've had to tell a lot of well-meaning friends that a visit will wipe me out! I've been told I have CFS for years, but like many people am dissatisfied with that given how it makes me feel that I'm being "written off."

I've never taken benzos for any length of time (just the occasional "crumb" of one if I'm feeling desperately anxious, and that probably twice a year), so I know it's not that. I've been told I have neurally mediated hypotension, and thought maybe that explained the problem I have with any sort of stimulation - a conversation, a laugh, a startle or fright, etc. I don't entirely understand it, but I think NMH includes a problem with adrenaline, which sets off a plummeting heartrate and BP. I know that's what happened with my TTT - I was reasonably okay with the tilting, but the minute they administered the norepinephrine (sp?) my BP and HR nosedived.

I know that's not very clear and doesn't offer a solution, but it's a possible alternative explanation - ? At least you know you are not alone!

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Talking requires deeper and more frequent breathing. I became the question asker and listener over the years.....its a real help in social situations! If or when people actually and really want to know about me....I make the time and breathe slowly. These encounters are only with people who understand my physical condition.

I am sorry this is happening to you ...but, you can adapt, improvise and improve....though it may take much time.

I learned from a retired minister to "always be tellen the truth, but not always be tellen it". That means, its ok to pass off your symptoms to those you don't see frequently, but you might want to inform those who really love you.

Sunshinegirl, you are exactly right. I am trying very hard to just be the listener but even that causes me to become symptomatic after a little while! It's hard because so many people ask me how I'm doing (they know I've been ill) and I always feel bad giving them the old "hanging in there!" without elaborating. Thank you so much for your encouragement and I definitely need to adapt to my new triggers a little better.

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Hello Michele,

I am so sorry to hear you are undergoing this terrible thing!! I personally can add the following from my personal experience:

I had EXACTELY what you describe for about 5-6 months in spring of 2014, when my POTS was at its worst ever. I simply couldnt lead and follow a conversation. No listening and no talking without getting symptomatic within minutes. Neither person to person nor on the phone. The symptoms I got were strikingly the same as yours: At first lightheadedness and a strange feeling of being "overloaded" in my head, very soon followed by heavy internal termors, extreme "nervousity", severe chills and teeth chattering! I too had to avoid eye contact. I had to excuse myself from conversations so many times. At some occasions I wasn´t even able to talk to docs in hospital für 3-4 minutes without getting theses symptoms. Talking/listening made me feel "overstimulated" in general. As a consequence, I couldn´t watch TV or listen to the radio - just the same symptoms within minutes....

Luckily, these symptoms went away when my POTS cleared up slowly since fall 2014. But I still feel that conversations longer than 2-3 hours could make me symptomatic in that particular way (though much less intense). And it still gets better and better now.

Last but not least, there´s something you mentioned and that caught my attention immediately: You say taking a small dosage of xanax sometimes helps at least little bit. I too was taking (and finally tapering) a benzo. I first took xanax then changed to diazepam and finally tapered that slowly. Exactely parallel to this, my POTS flared and especially the terrible conversation-thing started... So, my idea: Did you change your dosage of xanax recently? Or could it be that you are actually in "tolerance withdrawal" (=taking the same dosage as usual but actually your body would start to need more...?). Xanax in particular is a benzo with a very short half time, thus you may be getting into "interdose withdrawal" regularly.

I actually emphasise this benzo thing, because your symptoms don´t seem particularly typical for POTS, but rather sound strikingly like what people experience who withdraw from benzos - you can read literally hundreds of experiences exactely like yours on benzo-forums (like benzobuddies.org f.e.). One of the worst symptoms the members report is the inability to lead a conversation, followed by the symptoms you describe. In addition, tapering benzos can flare up (or even trigger for the first time!) POTS/dysautonomia. So you may look into this issue as well...?

Anyway, this symptom will go away, don´t worry!! I send you much strength and energy!!

Best wishes!!

Hi Goschi! Thank you for your reply and well wishes :) I am very comforted to hear that your symptoms dissipated after some time. Unfortunately, I'm going on 6 months but I'm hoping the end is in sight! I know this doesn't seem like a POTS issue so that's why I just usually say I have dysautonomia in general. However, I do get a bit of tachycardia after talking so maybe it's all one-in-the-same. I do take .25 or half of a .25 on occasions where I feel very ill (like verge of a POTS attack type-of ill) or if I'm anxious about something, like going for a long car ride. However, I was prescribed Xanex about 5 years ago and RARELY took ok. I think my first bottle of thirty pills lasted about 5 years and I recently had a refill. Now that I've been a lot more symptomatic, I do take it more frequently but I'd say only 2-3 .25mg pills a week. Being its such a small dosage taken infrequently, I dont think its from any type of Xanex withdrawal. I don't like taking it or medicine in general because I am overly worried about becoming dependent on it so I try to take as little medicine as possible.

I was on Wellbutrin for 3 years, it really helped me get some quality of life back the first time around, and was weaned off while I was in the hospital back in December, but I had no withdrawal symptoms (I was only on 75mg, 1x day the entire 3 years) and this talking trigger was present before I stopped that.

I wonder if this is a rarer Dysautonomia trigger and it just happened to coincide with your tapering off? It's so hard to find a reason and trigger for all of this stuff because it seems our bodies are overly sensitive to just about everything! Happy yo hear that you're doing much better though :)

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I have the same problem with conversations, even on the phone. It's so frustrating how rotten a phone call can make me feel, and I've had to tell a lot of well-meaning friends that a visit will wipe me out! I've been told I have CFS for years, but like many people am dissatisfied with that given how it makes me feel that I'm being "written off."

I've never taken benzos for any length of time (just the occasional "crumb" of one if I'm feeling desperately anxious, and that probably twice a year), so I know it's not that. I've been told I have neurally mediated hypotension, and thought maybe that explained the problem I have with any sort of stimulation - a conversation, a laugh, a startle or fright, etc. I don't entirely understand it, but I think NMH includes a problem with adrenaline, which sets off a plummeting heartrate and BP. I know that's what happened with my TTT - I was reasonably okay with the tilting, but the minute they administered the norepinephrine (sp?) my BP and HR nosedived.

I know that's not very clear and doesn't offer a solution, but it's a possible alternative explanation - ? At least you know you are not alone!

Hi targs66! Yes! You are exactly right, laughing, being startled, talking, all induce a similar reaction. It's so hard because laughter is supposed to be the best medicine!! Not for us :( I was diagnosed with POTS by TTT although I was not injected with anything. I also have NCS/NMH triggers so doctors say I have a compilation of different types of autonomic dysfunction. I wonder if the talking trigger is more of a NCS symptom? Do you mind telling me what some of your other triggers are?

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Oops. Unfortunately there isn't much in the way of treatment. But of late promising research is coming out. I think if you type in iom report on systemic exercise intolerance disease. You willl get some idea.

I just did a little research and couldn't find much on the diagnostic criteria but did read about all of the research being done. Being CFS is thought to be inflammation of the central nervous system, I would assume that many people who suffer from dysautonomis have some type of symptoms related to CFS and visa versa. Very interesting. I am going to ask my rheumatologist about it and thank you for the info!!

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I know from my family's experiences that talking is exhausting. My mom has said over the years that she has lost most of her friends because of chronic illness. No one has ever diagnosed her, but our old dear PCP said years ago that he felt it was autonomic. He was definitely ahead of his time, that's for sure. She starts getting clammy, exhausted, not quite all the symptoms you are describing. But, I think we all show things a little differently and it could still all be autonomic. I have the overstimulation feeling very easily, as well as my daughters, my mom not as much. She shows hers in other ways. Singing makes them dizzy, conversing, being startled can cause immediate tachycardia in my oldest daughter. So, we have a rule in our house "No Startling". I don't want any heart attacks happening!

This all seems to be something that no one gets over in rapid time. I, too, have noticed from my own daughters that a virus triggers some horrible things. We try to keep them away from people who are ill and we are sort of hermits when it comes to winter time and everybody is hacking, coughing, etc. But, there is always the person that says, oh don't mind me, I have a little cold. I just want to scream GET BACK!!! Why don't people stay home when they are sick? Really, nobody else wants it! I hope you feel better (I would say "soon", but that's not realistic), and I hope you find a competent doctor that can put all of your pieces together. When you find that doctor, can you let all of us know? I would sure be interested.

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CFS is a very real disabling illness. It has robbed 12 years of my life. It is really a form of dysautonomia. The name is being changed to systemic exertional intolerance disease. If you google that, along with new diagnostic criteria u ll find stuff. I watched the I O M video yesterday on it, a lady doctor spoke fabulously. Pointing out how the name CFS trivialises it. Which it does. I hope to raise awareness of this very real illness. Some docs shrug at it, like psychiatrists who just say somatisation....what a croc. But a good doc in this day and age will realise the gravity of it.

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Hi Michele,

I'm so sorry your condition has worsened. I can relate to much of what you are expressing. I have a very low sensory overload threshold. Some days it seems to be more of a problem then other days. Engaging in conversation with others either in person or over the phone can be exhausting and for me cause those feelings of over stimulation, light headedness, head pressure, jitteriness etc. I think it's a rise in catacholamines. I guess my facial expression does change during these episodes as my daughter and husband have commented on it. I laugh and say I'm having a cat fight but it's anything but funny. I basically just have to pace my interactions and set boundaries. Surprisingly over time this issue has improved. Medications and developing coping mechanisms have probably contributed to that. I always visit sitting down, I use slow deep breathing and I have learned to tune out a lot of the distractions going on around me which helps reduce the over stimulation. When I have reached my limit I just have to excuse myself and lay down somewhere quiet. I hope you find something that helps you with this issue as I know how frustrating, confusing and isolating it can be.

Janet

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Hi targs66! Yes! You are exactly right, laughing, being startled, talking, all induce a similar reaction. It's so hard because laughter is supposed to be the best medicine!! Not for us :( I was diagnosed with POTS by TTT although I was not injected with anything. I also have NCS/NMH triggers so doctors say I have a compilation of different types of autonomic dysfunction. I wonder if the talking trigger is more of a NCS symptom? Do you mind telling me what some of your other triggers are?

I guess my worst triggers are stress and fatigue. I have a real problem with anxiety, which of course makes me feel stressed, even when I can very logically look at a situation and say there is no reason at all to stress over it. I end up in a sort of feedback loop overthinking the most minor things!

I've had two TTTs, several years apart. The first one didn't include an injection, and the results were "normal" even tho my starting BP was something like 79/48. During the second one I was "borderline" POTS but when they injected a synthetic adrenaline I crashed, and based on that they diagnosed the NMH.

Yes, it's very frustrating when you are avoiding laughter b/c you know it's going to make you feel rotten!!! :(

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Michelle,

I do have seizures with my POTS, non-epileptic. I often go through extended periods where I can't move my body, or talk, and can barely breathe, but I am aware of my surroundings. Sometimes it feels like I have marbles rolling around in my head. I get scrambled and confused. I also feel physical pressure in my head.

One EMT actually thought that I was faking. She did a very painful chest rub, which I couldn't feel until the next day, and told me I was faking. I could hear her, but couldn't respond. After carrying me to the ambulance, they told me if I didn't help them get my clothes off, they would cut them off. Big whoop. I still couldn't respond. After lying down for a while I was able to move one arm which I attempted to use to take my hoodie off.

I thought it was completely out of line, but that's a total tangent.

Anyway, I'm feelin you on this one.

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Hi mewinston,

I couldn't tell from your post if your seizures are diagnosed or not but your description of the incident with the EMT reminded me very much of cataplexy. I didn't know if this info would be helpful to you.

http://en.m.wikipedia.org/wiki/Cataplexy

I have daytime hypersomnia but my docs were concerned at one point that I might have narcolepsy w/ mild cataplexy. The sleep studies only proved hypersomnia.

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Pre-POTS by about 10 years, I remember helping my son with some reading in the evenings before bed. I was trying to get him interested in why he should read, so we started a book that was interesting to him and I did most of the reading. After a couple of nights I had to quit the reading. I found after maybe 10 minutes I was out of breath.

Fastforward to POTS, I quit doing a lot of social talking. Besides running out of breath, it just aggravates how I feel. I won't "visit" with anyone one-on-one other than my grown kids. I CANNOT be forced to carry a conversation, as when I hit my limit, I need to quit talking. Luckily, my husband LOVES to talk, so he easily picks up where I can kind of sit back and be quiet(I was always a more introvert anyway).

Kind of related...I noticed when I roll over in bed, which is a huge, whole-body process as my muscles are weak, that I kind of do a Valsalva maneuver at the time due to the straining. As soon as I settle back down, I get a flush. Does anyone know what a Valsalva and flushing/vasodilation means??

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