MikeO

12 minutes ago, CallieAndToby22 said:

avoid carbs, anything heavy, and eat very small meals/"snacks". 

I knew carbs like spaghetti gets to me so i do avoid it. Usually i feel nauseous, overly full and generally Ill. If it gets bad i will get hot and start to sweat "I now know it is not male menopause lol" If I do get off my feet for a bit i will run into trouble with low BP for sure. Guess there is more stuff i need to work out.   

Well starting to think my drop in BP after eating is abnormal.

Postprandial hypotension may be diagnosed if you experience a drop in your systolic blood pressure of at least 20 mm Hg within two hours of eating a meal.

@LoxI get was getting the mystery pain as well. Bottom of my right foot, calfs, thighs, left butt cheek. While i do have PVD and get claudication in the calves when waking the Vascular DR said the pains outside of walkining were not due to the PVD. Since i went onto the drug Mestinon the pains have mostly gone away. 

@CallieAndToby22

4 minutes ago, Rexie said:

I get real sleepy

No wonder the evil recliner calls me after eating Ha. I will try the coffee trick. Thanks again!

14 minutes ago, Rexie said:

I use an albuterol inhaler for occasional upper esophagus/throat area spasms.

Thank you for sharing @Rexie when i aspirate it can be a event. The albuterol is a savor. I am getting better at avoiding avoiding episodes so liquids i will just spit out, does not matter where i am. I do take care with solid foods. As i have choked on them before, as much as i like steak this is one i watch out for. 

Made this one was good. Just have to take it easy and not eat too much at one time.

https://www.smalltownwoman.com/tortellini-soup/?fbclid=IwAR0Y2kwqHdoEpqpnhH6SjPdKhNo3GvPC8qW_CKtPWjJ1e109LcFKjkLSisM

Hi,

Is it normal for your BP to drop after eating?. I started to track this as i usually feel Ill after i eat. it does not drop a whole lot "around 18 to 25 hg"

14 minutes ago, CallieAndToby22 said:

but they are just worried about ports

I would be concerned about getting an infection with a port just not sure what other concerns are?. I go a lot even seems at times after peeing i go and pee again. even with my latest trip to the ER for a fall the fluids they pumped in went right thru me. So only thing i can do is to replace the fluids i get rid of. if i don't i get really fatigued and feel ill

5 minutes ago, CallieAndToby22 said:

I have severe Interstitial Cystitis

So sorry you have to go thru this. I did not know. Yes the electrolyte drinks can be harsh on the stomach i do have days where i can not tolerate them.

did find this writeup on baroreflex failure id interesting.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1855694/

@Pistol soup looks really good, I am going to try it. My Mom was from Germany she use to make a totally awesome German potato salad. 

39 minutes ago, Delta said:

(Have you been rummaging around in my kitchen?! We have exactly one "Corelle Livingware" dinner plate in the house, and that is exactly what it looks like)!

Ha....can't even remember where i got the plates from. I know it was about 40 years ago when i first moved out of my parents house. Have to say the dinnerware has held up. 

35 minutes ago, CallieAndToby22 said:

So ridiculous!!!!!! These doctors need to become informed and do some research!!!!?????? 

Totally agree.....

27 minutes ago, CallieAndToby22 said:

I can't retain fluid just urinate it out so I have to drink filtered Walter with salt tablets dissolved in it. Still I'm going to the bathroom constantly. If I get saline iv's that is the best treatment for me thus far. For me it's never enough salt, my blood pressure is still desperately low. My ex boyfriend used to urinate a lot as well and I told him to increase salt intake and it helped, we both have the same rare blood cancer. Edit: Also there is a thing called "low blood volume POTS" and I read about a guy getting saline infusions every week and after a year with continued infusions he recovered. 

I know never an easy solution. I am just glad i don't need the IV's. As to peeing i do it a lot but have found a balance between taking water and other drinks and the color of the urine. I don't take salt tablets because of my heart too much and i pump to hard. I do drink electrolytes which help. Vitaminwater works for me. no sugar or salt and plenty of B vitamins to help the nervous systems maybe?. Sleeping at a 30 degree angle at night helps as well. and as usual when in the mood will drink a hot V8 cause i can

41 minutes ago, Pistol said:

If you retain fluid you may have additional problems other than dysautonomia. 

Oh i do. Just pointing out to be careful with salt. By all means i do understand the blood volume and BP. I am just doing the same a different way.

14 hours ago, CJ65 said:

labile/high BP too

Yes, does not take me much to get up to 180 or 225 when not feeling well. Edit: adding i can also drop into the 70's as well

@PistolSo isn't salt contradicted with folks with heart issues. I will balloon up and gain water weight that i can not handle. 

1 hour ago, CJ65 said:

So when I stand, the message from baroreceptors to brain is interrupted

@CJ65this is what i question. Hopefully I can get a diagnosis because it does consume a good part of my day. 

Thanks @Pistol explanation kinda helps. I think the best i can do is to write this out till it makes sense to someone other than me. Upside you did save me from bringing up male menopause as the cause of hot flashes with the DR Haha.

16 minutes ago, Teodor said:

baroceptor damage

I have this on the list of have to ask the neurologist. While i have had issues for a good number of years and started progressing after open heart surgery, my first really bad event "was hurt" hitting the floor was a month and a half after my carotid endarterectomy has been downhill since

Hi,

I am prepping for my visit with the Neurologist office in a couple of weeks. One symptom i struggle with describing to the medical professionals is the classic whoosh that a lot of folks with dysautonomia experience. It is usually met with i never heard of that or i don't understand and if i am in a flare i have a hard time getting the word out to get the point across.

I have heard pulsatile tinnitus used, not sure if it is simple as that or is there another term used for this. I know were all all a bit different but i am sure what i feel is close to other folks.

Make a postural change, feel some pressure and whooshing, lightheadedness and if it progresses have the need to sit or go down.

Thanks in advance

Mike   

29 minutes ago, cmep37 said:

I was diagnosed through a TTT

I would have just been happy to had a diagnosis when i had my two TTT tests but the health provider did nothing with the data because it showed not being a cardiac issue but clearly showed a neurogenic origin "frustrating" so i went to the University in Madison Wisconsin and it only took the Girl 10 mins to figure out that i have neurogenic orthostatic hypotension. 

Thanks! @cmep37 I think i will hold off on the swallow test for now. I am not even sure what the trigger is for me. I only get maybe a dozen a year but i never tracked them as i thought it was angina. I know one for sure was when i went outside in the really cold weather "20 below" and it kicked off. I worry more when i aspirate.

On 2/27/2006 at 5:58 PM, MightyMouse said:

neurological symptoms such as weakness in my extremeties, shooting electrical pains, numbness and burning sensations, swallowing/aspiration problems, etc.

Well add this to my list as i have mild to severe Cervical spondylosis. I do have to agree not having any spine surgery as it does carry some degree of dissatisfaction so hoping that PT can help some of this out.