jeff_jefferson2

any update on your headaches?

Have you seen any doctors? Do you have a formal diagnosis of POTS? Taking medication?

On 1/21/2020 at 12:15 PM, KiminOrlando said:

Mine got worse with neck manipulation. I was sitting in a chair and almost fainted. I NEVER faint sitting. He stopped and the immediate feeling of looming unconsciousness went away, but it took months to get back to 'normal'. I have craniocervical instability, but they stopped short of calling it EDS. 

I think chiropractors are taught that this isn't from their work, but I also think they don't study the effects on people like us. They base it off a typical person. I stopped going to my doctor because it was expensive and I wasn't seeing any positive changes for me. Everyone is different though.

same! I tried going for headaches/neck pain and after the 3rd neck adjustment I nearly fainted as I was walking to my car. I'd never go back to any chiro for a neck adjustment.

On 12/3/2019 at 11:56 AM, Delta said:

Before I was diagnosed with POTS and taking any meds, I occasionally had what I can only describe as "stomach palpitations" - it felt like heart palpitations, but they were in my stomack! Not sure if that's what you're feeling.  It had gotten to where I was dizzy and lightheaded day in and day out so it's hard to tell if they coincided with any of those feelings. Sorry you're having to deal with this.

This is an excellent way to explain it. It's like a skipped beat but in my stomach...

On 12/3/2019 at 2:47 PM, Pistol said:

@jeff_jefferson2 - I am not sure if this is what you are experiencing but I get esophageal spasms that at times feel like palpitations. Sometimes I can only describe them as "Hick-ups" in my chest/throat area, definitely different from actual palpitations. 

Did you get any answers as to what it was?

anyone get stomach spasms that coincide with feeling faint? They last for a second or 2. No pain.

can pvc's/skipped beats make you feel faint/light headed for a second or 2?

can skipped beats/pvc make you feel faint/light headed for a second or 2?

 I'm laying down and getting a tattoo. I was in normal psychical health and was not diagnosed with anything at all. I'm nervous about all things involving needles so I'm 99% sure I didn't eat enough before hand. I definitely had plenty of fluids and had water and gatorade with me. After at least 2 hours of laying flat, I got up to take a break. After about 10-20 seconds I slowly collapsed. Tunnel vision, light headed, weak, slowly fell down. Can this happen to a person WITHOUT POTS?

Can anyone recommend a monitor that you wear across your chest and can see your bpm in real time. Something more accurate than the fitbit and apple watch.

35 minutes ago, KiminOrlando said:

My doc does this every visit. Poor man's TTT.  Wants to know how your BP and HR respond. 

Right, but why did i feel like that when that's never happened? I had a real TTT and lasted about 10 min before feeling sick. It's my understanding that with POTS the person always gets tachycardia/dizzy upon standing. This doesn't happen to me at home though.

The first doc i saw said i only had dysautonomia.(had an autonomic reflex screen done)  I wanted to get a 2nd opinion from someone else. So he has me lay down on the table for a few min and the nurse takes my blood pressure and monitors pulse. I stand up and within a few minutes I started to feel dizzy and feel like I could have passed out if I didn't lay back down. This has never happened to me at any point over the last 2.5 years. (dealing with pots symptoms for 2.5 years) The new doc said I have POTS but didn't elaborate on much else. Any thoughts?

Thanks for the responses. Unfortunately, I'm not qualified for anything that pays well. My disability already ran out too.

Of course I just had to be a welder in construction before I was diagnosed.  I don't feel like I can do the things I used to do in terms of psychical work. Certain things I can but no job is going to want to accommodate that. It also comes down to a safety aspect as well. Has anyone changed careers?

7 hours ago, Pistol said:

@jeff_jefferson2 - my husband had severe problems with bloating and has Small intestinal bacterial overgrowth. He used to look like a 5 month pregnant person and also suffered from belching. EGD and colonoscopy and biopsies were all normal. He improved after including pre- and pro-biotics into his diet and cut out certain fats ( such as are in most snack foods ). Also it may be important to notice the appearance of the stool: if it floats there may be an abundance of fats, if it is too loose or too hard it may mean you need to add fiber. I assume that during your surgery you had antibiotics - they CAN ( but do not have to ) cause a change in the amount of bacteria we have in our gut and this can also cause a lot of issues such as bloating and belching. 

Thanks for the response. I never had any surgery so I'm not sure what you are referencing. Can you recommend a pre/pro biotic? I've never had them before. Thank you

Thanks for the responses. The rolaids didn't do anything for me. Wouldn't tums or rolaids help for bloating or not necessarily?  I am literally bloated 24/7 (I have a visible gut lol) so wouldn't I have to be eating something every single day thats bothering me? I rarely eat processed foods and stopped drinking soda years ago. Perhaps eliminating gluten would be a good start?

3 hours ago, Pistol said:

I have POTS as well as GI issues including bloating - I personally think it is related to the POTS in my case. Try Fennel seed - it really helps with the bloating if you chew the seeds very good. 

I will definitely try. Thank you

2 hours ago, WinterSown said:

have you had any relief from over the counter products?

 

The only thing I've tried is Tums and they didn't do anything.

I am visibly bloated 24/7. I have no idea if this is related to dysautonomia. It's been going on for around 4 months now. I've had several tests done and all were normal or negative. Tums and ginger tea does not do anything. It feels very uncomfortable to relax my stomach. Any ideas or suggestions?

On 11/14/2018 at 1:28 PM, dancer65 said:

Do you have muscle tension or pain in occipital area ? My nurologist wrote a letter to say to my Dr he thought the headaches/migraines were caused by fibromyalga . I have headaches most days and migraines lasting about 3 yo 4 days .

 

Yes, and when I rub/massage that area I usually feel the pain go to the middle of my forehead (right where my headache is). I mentioned this to my doc and he just said it could be a pressure point. I went to PT for nearly 4 weeks to have my neck worked on but there were no lasting results.

On 11/15/2018 at 8:02 AM, DizzyGirls said:

This topic interests me greatly, as this is my daughters' primary and most debilitating symptom.  Theirs is autonomically related.  It's also a form called visual vertigo and if not kept under control, it can develop into rotatory vertigo.  That has become increasingly difficult to do.  The Epley maneuver (or the like) does not work on them.  Makes them pass out.  There was a couple of exercises that my oldest daughter had with her PT that was part of vestibular rehab.  She could do them really well, but didn't improve the vertigo.  For my girls it's ANS controlled.  They take a variety of meds to help.  Most of the time that works well, but for my oldest, she's been just miserable lately.  Everything sets it off.

There are lots of different maneuvers for vertigo. Do you know if they tried others?

On 11/13/2018 at 6:14 AM, StayAtHomeMom said:

I have had bouts of constant dizziness. It was in the beginning of my issues and it lasted around a month. No matter what I did it wouldn't go away. 

I suspect my oldest son has POTS and his big symptom is headaches. He has headaches at least 4 days a week. When they are bad he lays down and they seem to ease to a manageable level. 

Do you have sinus issues? Have they ever investigated your headaches?

Besides allergies, I don't really have known sinus issues. I've had an MRI of the brain, and a CT scan of the brain and sinuses done. All were normal

On 11/13/2018 at 11:00 AM, WinterSown said:

I have vertigo. It's one of my worst symptoms and it sets off Drop Attacks--I faint without losing consciousness; I can collapse but I stay awake. I don't often get the spins but I feel like the world is moving at a different speed than me, sidewalks elongate and warp, turning corners can seem like going around a banked turn, door knobs extend beyond my grasp. My balance is poor, I feel like I'm going to fall over backwards when I walk up the slightest slope like a wheelchair ramp at the end of every curb. Walking up stairs is worrisome, especially if I am carrying packages--my balance is off and I feel like I'm going to fall backwards. I've added to my pillbox aspirins or ibuprofen so I take it regularly, twice a day. By adding them in with my prescriptions pills for morning and evening I have considerably less headaches and pain. 

I have had positives on every dix-hallpike they've done, last year the audiologist did a whole series including a vemp test to look for imperfections in the tunnels of my ears. I've looked at images, flashing or still, circles, moving things, had clicks pounding into my ear. Ugh. The VEMP test was horrible--it's like sonar mapping of your inner ear, it doesn't hurt but dang, super willies!   I am on my third Vestibular PT script. The first sessions rearranged the crystals in my ear and began my balance and strength training. Each successive script has added more intense balance and core. I can hold myself up if I have an attack. My primary diagnosed the vertigo before I was diagnosed with dysautonomia. All the ear tests confirm that there is no physical deformity causing the vertigo and so it is attributed to dysautonomia. I have excellent hearing for 61 but my balance is not there. The primary prescribe 2mg diazapam (low-dose valium) for symptoms as needed, it does lower the sensations and tone down or remove the headaches. I bite the pills in half--for me one mg seems to do fine, a full pill and I need nappies. There is an OTC product called Bonine, often sold for sea-sickness, that may give you some temporary relief. 

Vertigo and imbalance are very treatable once you are tested and it is confirmed. A Dix-Hallpike test will rapidly confirm vertigo in the doctors office. It is non invasive and takes but a few minutes. For now, try to avoid areas that are going to give you a lot of sensory overload. Shop at slower hours or schedule at-home delivery to avoid stores which are meant to be flashy and get your attention. You need calm and quiet--stores and businesses don't do that until their very slowest hours. Feel better soon.

This sounds awful. How often do you go to PT? Is it still helping?

19 hours ago, Clb75 said:

I had vertigo when I first got sick with pots. I had it for 6 weeks continuously 24/7. The neurologist and ent went back and forth and could never give me a firm diagnosis of where it was coming from. It finally subsided once I started getting treatment for pots. I still have a lot of upright dizziness but not vertigo. I get migraines now too, I never had them before pots. I cut a lot of food out of my diet and fortunately don’t have to take any medicine for the migraines, but I’ve heard that they are common in Pots. 

Have you seen a neurologist? They may be able to further pinpoint where your headaches and dizziness are coming from.

How were you treated for POTS? Did you ever take anything for your migraines? I've seen 3 neurologists. The first 2 just wanted me on pills with no explanation of my headaches. The 3rd ordered an MRA but insurance never approved it. After i was diagnosed with dysautonomia, I never pursued it

19 hours ago, yogini said:

Vertigo is spinning/dizziness related to an inner ear condition. I experienced POTS related dizziness as my main symptom virtually all the time until my POTS began to improve.  POTS related dizziness doesn’t usually involve spinning. Headaches are also a symptom of Dysautonomia.  All of my symptoms began to improve once I got on the right medicine.

what are your heart rate and blood pressure when you experience the symptoms?

How did your POTS improve? I have a headache 24/7 so it's hard to say about my BP but it's always been normal. The only times I get symptoms of tachycardia is when I do minimal psychical exertion AND at random times I get episodes of tachycardia when I'm doing nothing. I've had several episodes of just standing and my heart rate was in the 140's. I was told I don't have the postural part of POTS.

Has anyone here experienced episodes of vertigo? I know people here get dizzy and lightheaded but what about a 24/7 dizziness? I've head a constant headache for about 22 months now. Every single second of the day I'm aware that my head hurts. Anyone else have this?

Being on Xanax for long term use is awful. Tapering off the drug, is the absolute worst. Has she ever had any diagnosing for the vertigo? I would suggest a VNG test or meeting with a vestibular physical therapist. 

20 minutes ago, yogini said:

I was diagnosed through the tilt table test. That is the most common test for Dysautonomia. It seems extremely common for people with POTS to have tachycardia in all positions, not just upright.  I haven’t heard of too many people, if any, that only get it when they are standing.

Interesting. Several people in this thread say it only happens when they stand up. What was your tilt table test like? To my knowledge, there are different types of tilt table tests. I recently had an Autonomic Reflex Test (ARS) It was 2 hours worth of testing and there was a tilt table part. However, it only raised me 1 time from a laying position to a standing position. I stood up straight for 10 minutes and by the 9:30 mark, I felt faint, dizzy, and very light headed. How is this any different from standing on the ground? I have never felt like that from just standing.

On 10/13/2018 at 3:17 PM, yogini said:

Yes.  

Can you elaborate on how you were diagnosed and what your episodes are like?

On 10/14/2018 at 5:18 AM, WinterSown said:

I get an attack when I stop moving or change position. So like, a zillion a day. 

 

What are your episodes like and how were you diagnosed?

On 10/12/2018 at 2:27 PM, yogini said:

I can have tachycardia at any time, sitting, standing or laying down.  It doesn't happen every time I stand, but probably more often than not. The biggest triggers for me are being in an upright position and activity.

And were you diagnosed with POTS?

On 10/10/2018 at 4:30 PM, Pistol said:

@jeff_jefferson2 - I am glad your cardiologist takes your symptoms serious and is willing to test you. Most of us are not in that capable of hands! - Elevated HR upon exercise is normal and expected, desired actually! A healthy individual will try to achieve a certain HR through exercise for cardio-vascular health. The concern comes in when the HR goes up to extreme levels WITHOUT exercise - simply from the act of standing/talking/coughing/walking - even sitting, and WITHOUT any recognized arrhythmia. --- Good luck with your testing!!!!

Thanks for the response. I should have clarified that my HR goes up pretty quick with minimal exertion.

On 10/10/2018 at 5:19 PM, StayAtHomeMom said:

Have you had IST ruled out yet?

A cardiologist mentioned IST  to me but it's my understanding that random episodes of tachycardia doesn't mean I would have IST. A lot seems to be unclear about IST!