redpeach

Anyone find benzos help calm the sympathetic nervous system down?

Has anyone been to Mayo in MN and been seen for Mast Cell too? Thank you so much. 

Has anyone came off of a benzo (Valium, Klonopin, Ativan, Xanax) with dysautonomia and been ok after? I'm tapering off of valium and it's been so hard. I also have MCAS too. Thanks everyone. 

@DizzyGirls I'm so sorry about your daughter. Do you mind me asking how long she has been on valium and what dose? I'm now at 17mg a day. I have been on valium for 8 years. 

@Jan How slow are you going? Thank you for your reply

Has anyone came off of a benzo (Valium, Klonopin, Ativan, Xanax) with dysautonomia and been ok after? I'm tapering off of valium and it's been so hard. I also have MCAS too. Thanks everyone. 

@Jojo79 How are you being treated for sjogrens? Thank you so much 

I had some bloodwork done to test for mast cell activation disorder, and this test came back abnormally high:

 IGE ANTIBODY (ANTI IGE)

I've been diagnosed with dysautonomia and small fiber neuropathy since 2003 with unknown etiology. Does anyone know what this high level means? Thanks everyone. 

Thank y'all so much!! And yes, I was diagnosed with dysautonomia and sfn at Mayo in MN in 2003. Said it was idopathic.  This disease is terrible. 

Does anyone have small fiber neuropathy with their pots? If so, where you able to get an answer as to why? My feet get ice cold, then burn and turn bright red. Sometimes when I walk they itch and go numb too. Something underlying has to be causing this! I also have full body aches, supine tachycardia and crushing fatigue. I feel so alone..

@MomtoGiuliana Thank you for your sweet reply.  I'm so happy your friend is better now. I struggle with the decision to come off the valium and worry so much about getting those horrible adrenaline surges and overall hyper-stimulation at all times. I wish I could talk to someone who had dysautonomia before going through a benzo taper. Everyone I've found developed dysautonomia during or after their tapers. So upsetting...

@mountain girlI tried tapering earlier in the year and went too fast and crashed. I've now been at my original dose 20mg/ day for the past 2 months and I still feel like I'm in withdrawal. What is happening?? I'm afraid I've flipped a switch in my brain by shocking my nervous system and the valium isn't working anymore. I'm depressed (never been in my life), agoraphobic, can't feel joy. I was fine before this benzo crash. I'm so confused. My doctor has no clue. 

I just say I get overstimulated while driving. Between the noises, the light sensitivity, the movement in front of me, peripherally, it's just too much for my sensitive nervous system. Some days are better than others. Some days I can't drive at all. Lots of days I can barely take the sunlight on the front porch. 

I was diagnosed with dysautonomia in 2001. It waxed and waned and got debilitating with horrible migraines in 2003. After a severe vertigo attack in 2009 I was prescribed 20mg valium. I've now been on it for 8 years. I would like to start tapering off but I'm afraid. It's not working like it used to and my doc wants me off. Has anyone out there came off a benzo and made it to the other side? Thanks everyone. 

Has anyone been on benzodiazepines long term and tapered off of them successfully with dysautonomia? I've been diagnosed with dysautonomia since 2001 and have been on valium for 8 years. The valium kept my dysautonomia in remission. However, these drugs are not good to take long term so I'm currently tapering.  Just trying to get an idea of what's to come. Thanks everyone. 

What works for the adrenaline surges? Does anything work that's not in the benzo or antidepressant area? Thanks everyone. 

5 hours ago, firewatcher said:

I have been on and off of Klonopin for several years at a time. I saw a good improvement in my symptoms while taking it. I tapered off slowly several times for autonomic testing at Vanderbilt. The last time I tapered off was due to changing primary care docs and HER stigma against the drug (its an "anxiety drug" so you have to have anxiety...) I have not been back on it for several years, but I do wish I still had it for flares and stressful occasions. If I finally find a doctor that will work with my on my POTS and not instantly go to the "anxiety" label, I will probably try to restart it.

There is a difference between addiction and dependence. You can be dependent on a drug (like insulin for diabetics) and NOT be addicted. You and your doctor (if you trust them) have to weigh the options for long and short term consequences and determine if the possibility or risk is worth the reward.

For me, the tapers were very gradual and slow (over 8-12 weeks.) My only withdrawal issues were a reoccurrence of the symptoms that the drug improved.

 

What kind of sxs do you have with your dysautonomia? Also, what sxs did the klonopin improve and after your withdrawal did your dysautonomia get worse, same, or better? Thanks so much. This decision is so hard to make  :/

Thank everyone for the replies. The valium definitely helps my symptoms. I'm going to slowly taper down to the most manageable dose and stay there. The taper is so long and painful. God help us all with this horrible illness. 

Has anyone started taking benzos AFTER they got diagnosed and then tried coming off? If so, did your dysautonomia get better, worse, or stay the same? Thank you so much. 

Thank you for your reply. I am wanting to get off them bc they cause dementia, not to mention they stop working eventually. 

I was diagnosed with dysautonomia in 2003 at the Mayo Clinic MN. I took atenolol and drank lots of water and increased salt intake. In 2009, I got a severe vertigo attack and was put on valium. The valium was a three food fold helper in that it helped with my migraines, adrenaline surges, and pvc's. I've been tapering off the valium now bc I worry about the long term effects. Has anyone had dysautonomia, been put on benzos long term, came off the benzos and been ok? The taper is  long and terrible but I would like to be off this med if possible. Thanks everyone.