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.

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.

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.

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.

That's typical of doctors. If they can't find a cause of something they blame it on anxiety, or they say it's imagined. Some of it is the fault of medical schools, some of it is doctors not further educating themselves, and some of it is the fact that many doctors are only in it for the money and status. I have had many doctors tell me that nothing is wrong with me. It's frustrating and it makes me angry that they should get paid by my insurance company when they have done nothing at all. In my opinion a good doctor would atleast do some investigating.

Like lieze said, it's the autonomic dysfunction that causes things like you described, but anxiety can cause the dysfunction. Stress can do some very strange things to the body.

I have that also, but it came from having POTS.

Depersonalization disorder?

I have been doing some skilled relaxation exercises for a couple of months and I'm beginning to notice a difference. I feel a bit more clear headed and my panicky/head pressure feeling that I get after eating is getting better.

Maybe you should try this. There is a doctor named Walt Stoll who has written some books discussing how relaxation techniques can help to undo many health problems. He says that it releases stored stress from the hypothalamus gland. You can check out his website at askwaltstoll.com. Take a look at the message board and you can get some advice from the doctor himself, as well as other people who practice his advice.

My method for relaxation is just to lie down with my eyes closed and do some deep breathing. I try to do it twice a day. This helps to bring the body into a truly relaxed state.

Here you go.

http://www.panic411.org/#Dysautonomia

My cardiologist diagnosed me, and my internist said it was most likely due to the stress I was/am under.

Actually, autonomic dysfunction can result from a high level of anxiety. This is what happened to me. I have depersonalization disorder and developed autonomic dysfunction from the constant worry and bracing.

I couldn't tolerate it. It made me spaced out and I couldn't do much besides sit in front of the television.

The only good way to test for non-celiac gluten sensitivity is through a stool test offered by a company called Enterolab. Do a google search.

I tested negetive, but a gluten free diet helps me as well. I did test positive for gluten sensitivity.

I keep thinking about trying choline, but I react badly to supplements so I don't know if I should.

Since choline is necessary for nerve signal transmission I was wondering if anybody takes it? Choline is also a precursor to acetylcholine, which also plays a role in the nervous system and regulates the speed of the digestive system. Has anybody had their acetylcholine levels checked?

I don't have a diagnosis yet, but I get that feeling sometimes. It's only for a split second, though.

Good idea. I'll try to do that. Money is tight these days. I haven't worked in over a year because of all this.

I can't remember what my bp was. It seems like my problems are the worst after eating. I definitely have some major blood shunting going on. For instance, last night after dinner I got my usual head pressure and dizziness and I could feel my heart beating faster to compensate. My legs even feel heavy after I eat. Blood sugar problems have been ruled out. Plus, I've gotten to the point where I can handle some exercise, as long as it isn't too fast paced. The good news is that I have finally found a specialist in my area. I wish I could go to one of the major diagnostic clinics, but I'm not able to travel that far and I don't have anybody that could take me.

Thanks. I'll report back.

I've been searching like a mad man for a dysautonomia specialist in Houston, Tx. Just as I was about to give up I came across one. The receptionist mentioned a 'Dysautonomia Lab' at the clinic. She is emailing a questionare to get me started. I'm really excited about this. I just hope I can get in and be able to cover the copays.

Here is the name of the doctor and clinic if anybody is interested:

Baylor College of Medicine

Dr. Harati

713-798-7411

The trouble is that I'm pretty far from dysautonomia specialist and I can't drive very far. But you're right. I have to find a doctor that can actually help me.

I actually asked her what tests she was running and they were all the typical thryoid, iron, liver ezymes, etc. The usual metabolic panel. I had that one run so many times I knew it would be pointless. But maybe a different endocrinologist would have some other ideas. I also wonder what could have caused my pancreas to become enlarged. At the time of the surgery the doctors decided it was probably something I was born with and just kept getting worse. This was way back in 1988 though. A lot of breakthroughs have been made in medicine since then, so maybe it would worth pursuing. Although, I've told a lot of doctors about it and none of them thought much of it. Not even my gastrologist.

I think I'll make an appointment with a different endocinologist.

In the meantime, my cardiologist never did say exactly how much salt to use. She only said to put liberal amounts in/on my food. My blood pressure often seems stable now, but I still have the excessive blood shunting toward my stomache after eating. Should I just buy a bp cuff and some salt tablets and maybe take a tablet only when my blood pressure is low?

Dianne,

I hope you don't mind, but could you tell me what you mean by weird symptoms being explained. Are any of your symptoms anything like mine?

I did go to an endocrinologist, but she didn't know what to do for me based on my symptoms. She just wanted to send me for the typical blood work. I didn't even bother having it done. Can you tell me what an endocinologist may look for? I'm pretty sure I have some hormones that are out of whack. I took one of those adrenal index tests that you do at home and mail away. It showed my DHEA level to be extremely elevated.

Anybody?

I also wanted to mention that I get confused easily and can't remember much of anything.