Does This Sound Like Dysautonomia?

[Apache]

I have been dealing with benzodiazepine withdrawal for several years now, and recently on the benzo withdrawal forum I belong to a topic was started about dysautonomia. It seems that a lot of people in benzo withdrawal are diagnosed with POTS; I myself was diagnosed with orthostatic intolerance when I first started experiencing withdrawal symptoms. That was a few years ago and I no longer seem to have problems with my blood pressure, but there has been one thing that will not go away; food and supplement sensitivities. I have only spoken to a few people on my forum that have the same reaction to food and supplements that I have, so it has often concerned me that it possibly isn't a symptoms of withdrawal, but something else instead. There aren't many foods that I can eat, and the ones that I can eat have to be rotated, and I can't tolerate any supplements at all, not even probiotics. The reaction I have to food and supplements isn't digestive in nature, but rather strange sensations in my head. I will get depersonalization, dizziness, head pressure that feels like I'm being pulled from the inside, anxiety, depression, insomnia, and I wake up the next day feeling like I have some type of hangover. I once got this reaction just from getting a drop of milk thistle tea on my finger. There are some foods that I can tolerate if they are processed. One that comes to mind is peanut butter. I can't eat peanuts or all natural peanut butter, but I can eat the more processed kind, such as Jiff or Peter Pan. I can't eat many vegetables at all, but there are a few in which the canned variety doesn't cause a problem, such as green beans. Fresh or frozen green beans will cause a reaction, but the canned ones don't.

I know nobody can give actual medical advice, but if anyone can tell me if this sounds like a form of dysautonomia I would really appreciate it. Thanks.

[Guest Alex]

Apache,

not sure I'm following you ...which one of your symptoms make you think you're dealing with dysautonomia?

Dysautonomia is a malfunctioning of the autonomic nervous system, and the ANS controls body functions like heart rate, blood pressure, sweating, or the contractions of the smooth muscles along the digestive tract that propel the food (peristalsis).

From what you're describing you don't seem to be complaining about any of these types of issues.

I'm no specialist but based on your post I'm thinking more along the lines of some sort of an allergic reaction to ...I don't know certain foods, or maybe food additives. Ever considered being tested for allergies? Or say eliminate MSG from your diet to see how you feel?

Ever considered seeing a dr about your problems?

As a side note - I've recently tapered off klonopin and I can tell you that even 4 mo off I am dealing with really strange symptoms - nothing I've ever experienced before klonopin, but my problems do not involve any bad reactions to food.

My 2 cents.

Hope you'll find the answers you're looking for.

Best of luck,

Alex

[margiebee]

I am currently tapering off of clorazepate but I had dysautonomic symptoms way before I even took my first benzo (have had symptoms for around 8 years, have been on clorazepate for about 1 year). It was actually prescribed to manage my symptoms of POTS and dysautonomia.

While tapering I have had some ramping up of my symptoms that already existed previously, but none of the horrifying symptoms I have read about on benzo forums, at least yet. I have cut my dosage in half, but I will admit I was taking a low dosage to begin with (started at 7.5 mg clorazepate daily, equivalent to 0.25 mg xanax or klonopin). My doctor says that if any of the serious prolonged effects were going to hit me, they would've by the halfway mark. I suppose I am lucky.

But as far as POTS or dysautonomia being caused by withdrawals, I think that orthostatic intolerance is definitely a withdrawal symptom. When I saw a specialist and tested positive for POTS he made sure the verify that my symptoms started before I even touched a benzo. I am not sure that food intolerances could be caused by withdrawal, and I am not sure that specific food intolerances fall under dysautonomia exactly either, although perhaps it could be a mast cell issue? Have you tried taking your heart rate or blood pressure during one of these episodes? I believe that normally people with POTS or dysautonomia will still have some kind of abnormalities in blood pressure and heart rate.

[Apache]

Apache,

not sure I'm following you ...which one of your symptoms make you think you're dealing with dysautonomia?

Dysautonomia is a malfunctioning of the autonomic nervous system, and the ANS controls body functions like heart rate, blood pressure, sweating, or the contractions of the smooth muscles along the digestive tract that propel the food (peristalsis).

From what you're describing you don't seem to be complaining about any of these types of issues.

I'm no specialist but based on your post I'm thinking more along the lines of some sort of an allergic reaction to ...I don't know certain foods, or maybe food additives. Ever considered being tested for allergies? Or say eliminate MSG from your diet to see how you feel?

Ever considered seeing a dr about your problems?

As a side note - I've recently tapered off klonopin and I can tell you that even 4 mo off I am dealing with really strange symptoms - nothing I've ever experienced before klonopin, but my problems do not involve any bad reactions to food.

My 2 cents.

Hope you'll find the answers you're looking for.

Best of luck,

Alex

Thank you for replying. I was actually under the impression that dysautonomia could present itself in different ways. I went to a bunch of different doctors when all this first started and none of them could tell me what was wrong. One even wanted to put me back on benzos, and at a higher dose. I had to figure out that I was in withdrawal on my own. I haven't been able to work for a few years now, and my medical insurance ran out a long time ago, so I can't go to anymore doctors.

[Apache]

I am currently tapering off of clorazepate but I had dysautonomic symptoms way before I even took my first benzo (have had symptoms for around 8 years, have been on clorazepate for about 1 year). It was actually prescribed to manage my symptoms of POTS and dysautonomia.

While tapering I have had some ramping up of my symptoms that already existed previously, but none of the horrifying symptoms I have read about on benzo forums, at least yet. I have cut my dosage in half, but I will admit I was taking a low dosage to begin with (started at 7.5 mg clorazepate daily, equivalent to 0.25 mg xanax or klonopin). My doctor says that if any of the serious prolonged effects were going to hit me, they would've by the halfway mark. I suppose I am lucky.

But as far as POTS or dysautonomia being caused by withdrawals, I think that orthostatic intolerance is definitely a withdrawal symptom. When I saw a specialist and tested positive for POTS he made sure the verify that my symptoms started before I even touched a benzo. I am not sure that food intolerances could be caused by withdrawal, and I am not sure that specific food intolerances fall under dysautonomia exactly either, although perhaps it could be a mast cell issue? Have you tried taking your heart rate or blood pressure during one of these episodes? I believe that normally people with POTS or dysautonomia will still have some kind of abnormalities in blood pressure and heart rate.

Thank you. Benzo withdrawal symptoms can definitely be intense; go slow with your taper if you can. I should try checking my bp during one of these reactions.

[futurehope]

If you have an underlying case of mast cell activation syndrome, the benzos might have been helping while you were on them. Then after you started withdrawing benzos, the underlying problems resurfaced. Maybe. Just a thought. All the sensitivities you mentioned, to foods and such, remind me of myself and others on the mast cell forum. That's why I am tossing this idea out to you. I have mast cell activation syndrome and POTS and I know that the best I ever felt was on the benzos, but I did not want to remain on them, as it seemed I would need more and more to get the same effect.

[Apache]

If you have an underlying case of mast cell activation syndrome, the benzos might have been helping while you were on them. Then after you started withdrawing benzos, the underlying problems resurfaced. Maybe. Just a thought. All the sensitivities you mentioned, to foods and such, remind me of myself and others on the mast cell forum. That's why I am tossing this idea out to you. I have mast cell activation syndrome and POTS and I know that the best I ever felt was on the benzos, but I did not want to remain on them, as it seemed I would need more and more to get the same effect.

I'll look into that. Thanks.

[margiebee]

futurehope, are benzos known to help with mast cell issues? Myself and my doctor suspect a possible mast cell problem and I improved significantly while on benzos, but I am discontinuing before I become too tolerant to them. Claritin also helps my symptoms slightly when I take it for allergies.

[Guest Alex]

Futurehope, you brought up a valid point here:

indeed, mast cell issues may trigger dysautonomia symptoms.

And since some benzos are mast cell granulators, this may be an avenue worth pursuing.

There are several here on dinet with lots of knowledge on mast cells, so hopefully they will chime in...or maybe you should start a new thread on that?!

Best

Alex

[futurehope]

I don't know what to start a thread for?

I was diagnosed with POTS first, then just recently with MCAS. MCAS is a relatively "new" medical diagnosis. Only a handful of physicians really understand anything about it. People with MCAS can have many different symptoms, too numerous to mention here, because the degranulation of mast cells has the potential to affect different functions of the body.

I was speaking of my own experience on benzos, which occurred before I knew I had MCAS. I felt the best while on them, but I refused to increase the dose to maintain the benefit. Also, benzos can cause depression, and I didn't want that problem. So, I stopped them.

It wasn't until years later, after seeing my current doctor, a mast cell specialist, and doing extensive reading on the mast cell forum, that I realized that benzos can be beneficial for mast cell patients. That was the case for me, and my current (MCAS) doctor was willing to let me reintroduce them, but I refused on the grounds I previously mentioned.

Anyhow, I don't profess to be an expert on all this. I am just relating my own experiences. When the original poster mentioned sensitivities to supplements and other things, I was reminded of myself. I felt that sharing the little I know may be of benefit to someone else with multiple unexplained symptoms.

[Guest Alex]

I don't know what to start a thread for?

I was diagnosed with POTS first, then just recently with MCAS. MCAS is a relatively "new" medical diagnosis. Only a handful of physicians really understand anything about it. People with MCAS can have many different symptoms, too numerous to mention here, because the degranulation of mast cells has the potential to affect different functions of the body.

I was speaking of my own experience on benzos, which occurred before I knew I had MCAS. I felt the best while on them, but I refused to increase the dose to maintain the benefit. Also, benzos can cause depression, and I didn't want that problem. So, I stopped them.

It wasn't until years later, after seeing my current doctor, a mast cell specialist, and doing extensive reading on the mast cell forum, that I realized that benzos can be beneficial for mast cell patients. That was the case for me, and my current (MCAS) doctor was willing to let me reintroduce them, but I refused on the grounds I previously mentioned.

Anyhow, I don't profess to be an expert on all this. I am just relating my own experiences. When the original poster mentioned sensitivities to supplements and other things, I was reminded of myself. I felt that sharing the little I know may be of benefit to someone else with multiple unexplained symptoms.

sorry I was actually suggesting Apache to start a new thread in order to get more answers ...my bad