[Synnove]

Hello
I have not seen a thread regarding the autonomic neuropathy, and I have a question, hopefully some one can help me.
I have autonomic neuropathy as well as SFN. Both documented by positive diagnostic tests.
Problem: For 1 year now, I have had this ongoing problem with tightness and fullness in my chest. It feels like a complete squuze or a spasm all over my chest, back and front, and it particularly ends up with a pain across mid upper back. The symptoms usually last for a few hours. It makes me short of breath. It seems to often come on the same times as I have flare ups from my SFN burning all over body, usually in afternoons. Not every day, it comes and goes.
I have seen pulmonologist, had all the tests, ct, bronchoscopy and all. Saw Cardiology, all negative.
IS THIS CAUSED BY AUTONOMIC NEUROPATHY? I have just resently come to think of this.
Apreciate any links to literature
Thanks for reading this

[en bloc]

Your symptoms sound like cardiac vasospasms...and yes they can be caused by autonomic dysfunction. They are not easy to diagnose, so unless you have seen a cardiologist well versed in autonomic neuropathy, you might not get a proper diagnosis.

The spasms can cause the arteries to collapse for brief seconds causing pain in the center of the chest, upper chest, and mid back...along with SOB, jaw pain, arm pain or any other symptoms generally common with a heart attack. The difference is that the spasms are for very short periods where as a heart attack continues. Even though the spasms are short, they can repeat frequently during periods of autonomic dysfunction, so can last any where from minutes to on/off for hours.

There is no good diagnostic test. It is usually diagnosed by ruling out other causes yet observing subtle changes on EKG or stress echo. Yet it doesn't always show. One of the ways to diagnose, is to actually treat it (with nitro) and if the symptoms subside, then it is assumed to be spasm related...either cardiac or esophageal (both treated the same way). There is a test for esophageal spasms...called manometry. Pretty uncomfortable test but it will tell if you have spasms in the esophagus.

You should check your BP during these events as well. It might be a sign of your BP dropping. Other causes can be simple indigestion or gas.

[Synnove]

en block.
thanks. Interesting. As far as GI, earlier on in the year they sent me to a specialty GI, due to my c/o chest tightness, the first guess was GI. I had the mamometry test done, and it was OK, even though I have felt as if there was esaphgeal spasm. The liquid(water) they have you swallow during the test is just little sips. But it is different when you eat and try to swallow a meal. Any way, the same Gi doctor had me tested with a 24 hour acid reflux testing, where I had to swallow an electrode and have a monitor for 24 hour. It showed super gastric reflux. And at the end he sent me for gastric emptying study, it showed gastrophoresis. So YES, autonomic neuropathy in GI. also causing a almost constant backflow of acid, due to slow emptying. But I sort of had this treated with Protonic 40 mg twice daily ( Yes, too high a dose, but doc sais I must) And too bad for me this again is causing poor uptake of Vit B12, and it is low, so I am just in the process of getting some Vit B12 IM ordered for a while.
That being said re. GI issues. Cardiac, I did have work up, but I think they did not think of this Autonomic neuropathy,I did not think of it eighter.
I just went to cardiologist a couple of weeks ago. He started me on Norvasc small dose, 2.5 mg daily. He said, this is not for BP( as normally it is given for) but as a vasodialator (for an anti anginal effect) (just like Nitro)
He said to try rhis come back 2 weeks to check on effectiveness. Perhaps this doctor was thinking in the same line as you en bloc. But I did not know, I have just been taking it routinely in am, and not as needed. And I have not noticed any relief, I think. Exept, one day, my pressure was loe in am and I did not take it. Pressure better later on, and I was actually having chest pressure, so I thought, I will go ahead and take it, it did help then.
I have had developed orthostatic hypotension in the last few weeks, and this is new. I will tell cardiologist this on next visit.
So, now all theese things seems to fall together.
I will also have a sleep study done, (due to autonomic problems with waking up seighs and strange possible sizures.
I had a 72 hour EEG but during that time, I did not have any episodes of that.
So, enbloc you think this is cardiac. Well regarding the vascular spasm,
I am also being treated for vasculitis, so this is possible. I have Levido Reticulitis. This is what brought me to the doctor last year, and got all theese problems with wasculitis and autoimmune problems.
So, I will hopefully have all theese thoughts brought to cardiologist, and the neurologist( I was thinking I might need some meds for theese chest spasm)
I will also bee seing a new neurologist re neuropathy treatment.
Thank you for this help
Synnove

[mrsD]

You can get a good response with oral methylcobalamin taken daily. You don't need injections. Methyl form is the active form, and if you use 5mg orally on an empty stomach, daily, you will have good levels, compared to injection. There are several studies now showing oral works well.

You can get it now at Costco, Walgreen's, in addition to online at
iherb or Puritan's.

Gas-X may help if taken with a meal. Try to eat simpler smaller meals, and that will help also. Gas can come from poor GI flora, so using some Kefir will replenish that. Lifeway kefir is now available in many stores locally. It has 12 strains, of helpful probiotic organisms to replenish your GI tract. It really works.

[en bloc]

Now that you mention the livedo reticularis, I think of spasms even more...because livedo reticularis is actually caused by the spasm of medium sized blood vessels in the skin. Again, an autonomic dysfunction.

Your cardiologist is on the right track with the vasodilator, but should consider nitro just to see first if this is helping the problem, then work on finding a medicine that helps longer periods of the day. If so, then a nitrate (long acting nitro) may be enough. I use cardizem CD and Imdur to keep the spasms under control. It takes time though to find the right dose (slowly), especially if you have orthostatic hypotension.

There are several things you can do to help with gastroparesis. First is to eat small meals vs large ones...also do not eat in the evening so to avoid night discomfort. A true gastroparesis diet avoids raw fruit, raw veggies, nuts, etc....things that are known to be hard to digest. Beano and gas x are helpful to manager gas from lack of GI motility. There are limited medications for gastroparesis, like domperidone. You should try working with your diet without this unless absolutely necessary and/or you have severe problem (gastric empty under 10%). Walk after eating helps to naturally empty stomach and sleeping on a wedge pillow can help also (but best to just avoid eating late). Those with gastroparesis can easily get SIBO (small intestine bacteria overgrowth) from unbalanced flora and back up into the small intestine or stomach. MrsD's suggestions help avoid this. Also avoid lots of sugars/carbs that feed this bacteria. There is also specific antibiotics (only used for GI) that also help if it gets out of control. The best mgmt is to stay on top of your GI health with simple changes in diet & habits that may not seem to do anything right away, but go a long way in the end should you get SIBO or severe gastroparesis.

[Synnove]

Mrs. D
With taking the Methylobalamin, how long should I wait before checking the Vit B 12 levels?
My last level was only 300, and it was > just a few months ago. I thought perhaps the test was wrong.
And will this oral supplement work even if I am on Protonix, which is, from what I understand, preventing vit B 12 uptake in the stomac?

I take Activia daily. Is that not a probiotic?

en bloc:
Imdur, is that not a betablocker. I used to take Toprol, and the prescribing doctor (my former very good PCP, who retired) said in addition to antihypertensive, it would also be good for my prolapsed mitral valve. But it was discontinued due to pressure rather low (perhaps due to side effects from all my neuropathy meds)
Do you think I should have continued to be on this?
The strange thing is, lately in last few months, my heart rate has been around 90 average. I always used to be 60 average, sometime lower.
So, something is going on
I have been feeling just this heavy feeling, and I too, thought is was cardiac related.
I do have a nonobstructive CAD ( can not remember which of the c arteries) and a left ventricle diastolic dysfunction.
It is good I will be going back to the cardiologist next week.

Thanks to both of you

Synnove

[mrsD]

Activia has only special one probiotic. Kefir has TWELVE different strains, a more complete source.

You should see results in the B12 within 3 months. Maybe sooner.
Don't take any for 5-7 days before your test, so you will get a better picture of your normal level.

And yes it will work, with Protonix. The B12 orally is passively absorbed even when intrinsic factor cannot work due to low acid.
It has to be taken on an empty stomach with no food present, so it can reach the lining of the intestine and not be absorbed into food.

[Synnove]

to en block
There is one more thing I forgot
In my last blood test my platelets were 400, and I feel that is a little too high. I did mention it in an E mail to my rhumatologist, who order the test, but I will not see her until next month, she did not reply. And I have just stopped Plavix.1 month ago. Perhaps she needs to send me to a henatologist. What is the best anticuagolant for this kind of situation?
I was on Plavix 2 years post aneurysm embolization, but finally, the neurologist is going to try without it. He said if not, he will start a differen anti platelet med.

[Synnove]

to Mrs D.
This was very good news for me I will definetly start Methylcobacamin.

Only one but, does this supplement interact with Synthroid as Vit B 12 B does?
I used to space this two out.

Thanks
Synnove

[en bloc]

Imdur is a nitrate. Toprol is a beta blocker.

If you were taking toprol for a while, then stopped, this may be part of your problem. Beta blockers must be tapered off slowly if taken for long periods, and still may have problems with higher heart rates, angina, etc after stopping. How long did you take it?

Your cardio needs to look at the entire picture as you have several factors...MVP, tachy rates, possible vasospams, and some orthostatic hypotension. One medicine may aggravate another condition. It takes time and patience to find the right combination to balance cardiac issues like this.

High platelet counts are somewhat common in autoimmune disease and inflammatory conditions. Being you are seeing a rheumy, I'm guessing one of these apply. I would indeed suggest seeing a hematologist. If you have an AI disease, you may also have other clotting issues like antiphospholipid syndrome(APS). Never hurts to have a blood work up when platelets are up.