I was just diagnosed with autonomic dysfunction along with migraines and vertigo. I know some other members on here also have autonomic problems too.could anyone tell me a little more about your experiences and connection to cidp? Thanks
If it’s not too much to ask, what is your specific complaint?
I’ve had fainting episodes, heart racing, blood pressure symptoms etc. I’ve read previous posts about POTS and thought I might have it. Just wondering About other people’s experiences…
I was diagnosed with autonomic dysfunction back in 2006. CIDP came on a couple months ago.
If you think you may have POTS or something similar, it's best to get it checked. Fainting episodes can be very dangerous, especially if you can't tell if they're coming.
I’ve been working with several doctors and going through tests, its all pointing towards autonomic dysfunction.Do you know if its connected to cidp? Are your symptoms controllable?
CIDP and dysautonomia are two different animals; they are treated completely differently. My dysautonomia is under control through medications and proper hydration. CIDP I'm still trying to get a handle on...
I’ve read that cidp can rarely affect autonomic nerves so I thought it might be related somehow… I’m glad to hear it’s controllable with medications; I’ve had two ER visits in the last few weeks!
I hope you get your cidp symptoms under control soon. It took me a few months of IVIG before I started to improve, but I can tell a difference now from where I was. Good luck!
This is interesting. I've had CIDP waxing & waning since 2007 ; earlier this year I had a scary episode of ventricular tachycardia but it didn't occur to me that it might be linked with my CIDP. I'll watch this thread with interest.
I had a really bad episode with the vertigo. thought i was dying. went to the clinic and they advise that i take some Meclazine, motion sickness med, OTC.
when i start to feel that sick to my stomach funky feeling, i take one, chew able, and it seems to make it go away.
just what works for me.
As is alot of the times the case, it seems that we are all unique onto ourselves with CIDP, and i think that is part of what makes the diagnosis and treatment so hard.
going here for my IVIG in a couple hours
Autonomic dysfunction is more common with CIDP than previously thought. This is one of my primary disabling problems. I would refer you to this link: http://www.ncbi.nlm.nih.gov/pubmed/16184605 . It states the following:
Muscle Nerve. 2006 Jan;33(1):78-84.
Clinical and subclinical autonomic dysfunction in chronic inflammatory demyelinating polyradiculoneuropathy.
Abstract
Autonomic neuropathy, although common in Guillain-Barré syndrome, is considered rare in chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and has not been systematically investigated in that disorder. The present study was aimed at determining the prevalence of autonomic dysfunction and investigating the integrity of autonomic nervous system (ANS) reflexes in CIDP. We studied 17 patients with idiopathic CIDP and 20 healthy controls. Six quantitative autonomic function tests (AFTs) were used: Valsalva ratio, 30/15 ratio, and inspiration-expiration difference for parasympathetic function; and tilt test, handgrip test, and sympathetic skin response for sympathetic function. Eleven patients had symptoms of autonomic dysfunction. AFTs were abnormal in 13 patients. Parasympathetic and sympathetic systems were affected with equal frequency. The tilt test was abnormal most frequently, followed by the 30/15 ratio. Three patients developed postural hypotension with loss of consciousness during the tilt test. Abnormality of AFTs did not correlate with the presence of dysautonomic symptoms; duration, severity, and clinical course of the disease; or with age or gender of patients. Our study suggests a higher frequency of clinical and subclinical involvement of the ANS in CIDP than previously estimated. Dysautonomic symptoms are frequent but are mild. However, upon prolonged passive standing, autonomic failure can lead to loss of consciousness. The subclinical involvement of the ANS affects mainly the sympathetic vasomotor and parasympathetic cardiovascular fibers.
- PMID:
- 16184605
- [PubMed - indexed for MEDLINE]
Thanks for the article. Are your symptoms controllable with meds? Have you ever had vertigo linked to any of your autonomic symptoms?
Very interesting discussion. A couple of years ago, I had a problem with a strange set of symptoms: chills and shivering, but a temperature of 103; racing pulse, as high as 150; hypotension (low BP); chest pain and nausea. At first they were sure I was having a heart attack, but tests showed that was not the case. Then they thought it might be some sort of infection, but couldn't find anything there either. Doctors never really did come to any conclusion, and at the time, I did not connect it to my CIDP.
Months later, I attended a talk by a neurologist from a nearby university hospital. She said that CIDP can sometimes affect the autonomic nervous system, something I might have read about, but never really absorbed or thought about. She mentioned some of the same bodily functions. When I told her my experience, she thought that might have been the cause. Of course, by then the whole incident was over, and I don't know what sort of tests they might have done anyway. But if it happens again, I am going to try to get an immediate IVIG.
Instability and vertigo have not been controlled with anything tried, and remains the primary reason for which I am disabled. Without hypotension, beta blockers are the mainstay of treatment for autonomic dysfunction, but have thus far been ineffective, as well as have other meds.
clb75 said:
Thanks for the article. Are your symptoms controllable with meds? Have you ever had vertigo linked to any of your autonomic symptoms?
The racing pulse (tachycardia) could be consistent with autonomic dysfunction, but not when combined with fever, chills and elevated temperature. It sounds like you had a systemic infection, or a brief thyroid storm as the two top culprits. If an infection, it was likely viral, or would not have easily resolved without antibiotics. In ant case, glad you got over it, and hope that there is no recurrence!
Uncle Bill said:
Very interesting discussion. A couple of years ago, I had a problem with a strange set of symptoms: chills and shivering, but a temperature of 103; racing pulse, as high as 150; hypotension (low BP); chest pain and nausea. At first they were sure I was having a heart attack, but tests showed that was not the case. Then they thought it might be some sort of infection, but couldn't find anything there either. Doctors never really did come to any conclusion, and at the time, I did not connect it to my CIDP.
Months later, I attended a talk by a neurologist from a nearby university hospital. She said that CIDP can sometimes affect the autonomic nervous system, something I might have read about, but never really absorbed or thought about. She mentioned some of the same bodily functions. When I told her my experience, she thought that might have been the cause. Of course, by then the whole incident was over, and I don't know what sort of tests they might have done anyway. But if it happens again, I am going to try to get an immediate IVIG.
Hello everyone. I was recently diagnosed with sensory CIDP a few months ago after 4 years of hell and being told I was just stressed. I believe my profile at Kaiser said “organic anxiety syndrome” (which made me so mad of course.) After pushing and prodding every branch of medical specialities, I finally hasHad a Nuerologist do a spinal tap and bam! CIDP. I read that of a 100 people with every sub variety of CIDP only 1 had the presentation that I do. Anyway I have noticed that I have some stange problems, besides my clearly related CIDP symptoms, that the Nuerologist seems to dismiss. I have been having major problems regulating my tempature. I can overheat at low tempatures. It can be 55-60 degrees and I’m overheating. Also my blood pressure and heart rate have been very high. I convinced my normal doctor to put me on Blood Pressure medication which as helped but I am still having issues. From what I read I think this is an autonomic problem related to my CIDP disease. My Neurologist says it’s because of my medication. Well I’m down to 8 MG of prednisone and trying to ween off. Vennlafexine for nerve pain and loss in my feet. I doubt seriously that those medications are causing this problem. One more thing. I went thorough a 3 month course of IVIG treatment. Has anyone experienced substantial skin problems? Lesions, peeling circular areas on hands and itchy widespread rashes over whole body? It became more prevelant the further along I got in my treatment. I’m in discussion to try to go to a subcutaneous type treatment for maintenance as opposed to the IVIG. Mainly for convenience and Kaiser paying for ongoing treatment. I’m hoping the rashes will not happen with the new treatment. Anyway, thanks for listening and I would like to hear your thoughts.
In CIDP the root nerves of the spine inflame. The root nerves run vertically in the posterior and anterior tracts of the spinal cord. These tracks exit in the ganglia (as nerve bundles) of the vertebrae. The plexus (complex nerve associations that spread out from the anterior horn) effect the thoracic section of the chest/abdomen muscles and organs (where anatomical dysfunction occurs). The organs are not effected directly, but the muscles energizing the muscles that are controlling the organs (and muscles related to the digest digestive nerve system) are.
Since CIDP is a progressive disease, with effects affecting the larger, longer nerve bundles first, it stands to reason that the thinner, shorter thoracic spinal plexus' will be targeted by macrophages and T-4 mutants last.
There are five different types of nerve and each are affected differently because of size, surrounding humeral composition, ionic states and protective composition.
Anyway, a very nasty complication of CIDP is:
https://en.wikipedia.org/wiki/Autonomic_dysreflexia
which put me in the hospital for five days and nearly killed me. SO, when low blood pressure meets high blood pressure... BAM! Yes, hydration, constipation, bloating, BP... all enter into the picture. However, in every drill down for CIDP I've read, it states that the disease gives us, 'strange symptoms', so, the key is to recognize the combinations of strange symptoms and mitigate them them before they bring you down.
Since at the root (pun intended) CIDP is a muscle disease, prevention is then using the muscles before they stab you in the back. This is called exercise. I walk 15-20 miles a week with attached free-weights, swim at least a mile every other day and by doing this I've held my ferocious CIDP at bay for 20+ years. I get 240 grams of IgG/month ($42,000/mo.), but without it I become a foul-mouthed, constantly whining garden slug, leaving the slime of my anatomical discombobulation in my tracks.
I also use a cane, a walker or a three different types wheelchairs, depending on the state of my relapse. I'm thinking of getting one with snow chains for next winter's fun in Austria.
Get a FitBit, to mitigate, to initiate, so you don't dissipate to progressive body rakes, feel the fasciculations, those body snakes, or flake -away in knackering nasty deadly jakes. A little hip-hop also helps.
It’s been awhile since I originally posted this and have since been diagnosed with POTS, a form of autonomic dysfunction. My doctor told me it’s very uncommon in CIDP but more so in GBS. Anytime you’re upright your nervous system can’t control for Gravity, so I have about 20 minutes before I get dizzy, lightheaded and feel like I’m going to pass out. Blood pressure problems and high heart rate are also part of it.
Sean, it could be your meds but if you suspect otherwise, finding a neurologist or electrophysiologist (cardiologist) that specializes in autonomic neuropathy could be helpful. They can do autonomic tests to rule these things out, and also prove that it’s more than anxiety. I have temp regulation issues too, it’s definitely part of the mix. As for the peeling hands and rashes, I know that’s a side effect of IVIG, but not sure what the treatment for it is. Can you switch to a different brand? Do you get Benadryl before your infusion? Hope things improve for you.