Kellysavedbygrace

Can you get a couple of liters of IV saline fluids?

I started the application process back in March as I realized I would not be headed back to work anytime soon. I had two doctors complete medical verification that I was unable to work and most people I spoke with made me think I would be dealing with a multi-year process of appeals and trying to prove my inability to work especially because POTS is not well known. I had extra paperwork to complete because I am an owner of my company so I have had a role as both officer and employee. I needed an assistant to help with the paperwork because it was overwhelming. But I received the call today that upon first review I was awarded benefits. Praise God! When the Social Security rep told me, I broke down into tears. It's good news, but sad too if you know what I mean.

I have not been diagnosed w a clotting disorder but I suspect I have something like that. I have trouble anyway w IV insertions. Last week when I had an IV put in it clotted before the nurse could get the drip running. She said that was unusual. This week when I had a pin prick blood test I had to get pricked twice because the first prick clotted before they could get enough blood for the sample. How is something like this diagnosed? Is it necessay to have a genetic test? Or is there some other lab work I can ask about?

This condition is probably one of the hardest mentally to deal with. (ditto Spinner) My PCP once compared me to one of his breast cancer patients and told me about how despite her condition she was able to go whitewater rafting and hiking, etc. Bless his heart. He was trying to encourage me to move forward but even though he has worked to study this to help me. (I'm his only POtS Pt) he simply doesn't understand. We not only have the physical ailments but are running at times on one cylinder of a brain while most everyone else (even those with tough chronic conditions and life threatening conditions) are running w a 4 cylinder brain. This is the part that no one - even most autonomic specialists- don't realize. Hippy, thanks for sharing your "loss of a dream" with us. I think we all can relate. I am so encouraged by many of the comments above about finding the good in the midst of our trials and suffering. Today I live a much simpler life. I spend more time than I would like concentrating on how to breathe and not as much time as I would like caring for others and/or getting tasks done. A year ago I was CEO of our family's IT Mangement and Security company, taking care of 4 kids and active in numerous community events and church activities. Obviously I am now unable to work, have very limited driving ability and often have to depend on others to take care of the kids and run the office. Now, It is a good day when I can sit at the family dinner table and enjoy their company without cringing at the many sounds, pitches and conversations. It is a good day when I can spend my rest time in the recliner and not flat out in bed, and it is a good day when I don't have to hold on to the walls to get around. I feel so dependent on God for my every need and care and I do put my faith and trust in Him as I walk through this journey.

I've had a hard time finding an EP doc to work w locally. They all seem to be much more interested in performing procedures like ablations which make them $. I have hired and fired 3 and now am seeing my regular cariologist for cardio issues bc he is willing to discuss treatment options w me regularly and has followed my case since the beginning. The only EP doc that I found to be helpful was Dr. Fred Jaeger up at Cleveland Clinic because he has years of experience working with syncope and autonomic dysfunction. Since POTS is a neuro issue that has cardiac affects most of us get sent to EP docs who don't specialize in dysautonomias. All that to say unless the EP doc you are seeing has worked w lots of POTS patients and is interested in Dysautonomia most likely you will not get a lot of answers from him/her. That said, I would: - ask for them to schedule a Tilit Table Test to confirm the POTS diagnosis. (if they don't agree to do this I'd run and find someone who will.) - ask if they have the capability of doing a serum Catecholemine draw during tilt. (this is a nice to have but not necessary. This can help determine if she has the "hyperadrenergic" type of POTS.) - ask them to explain their understanding of POTS and find out how many patients they've treated with it - I'd ask the who (if anyone) do they know in the area who specializes in or sees POTS pts regularly. You've asked a really good question here. I'd be curious as to what others had to suggest.

I actually downloaded a "white noise" song off of iTunes last night. Think I was listening too long and too high as my ears are ringing more today. Wish I had waited to read your post. I will experiment w it as u suggested above. Thanks B!

Yes. And for me it usually happens when I am having really bad circulation, palipitations or have been in bed for 3+days. And I'm sorry you feel so bad. I agree with the others and makes me wonder what has changed w your system. I'll make a mental note next time I feel this way to go get a CBC. May also want to check your Vit D level because I have low Vit D and when it is really bad I deal w bad mental fatigue. When I saw that you posted this I was sad because you are so encouraging and helpful to me and so many others on this forum. I appreciate all the wisdom you have shared w me. Hang in there. You are not alone.

Ditto to all above. Perhaps this is one of those times to get a note from a doctor. Do you have a doc that can help with this right away rather than wait for the sleep study? I'm just think it is great you can still work. I know it is harder on you than most everyone else and most people don't understand. Hang in there. We're behind you.

Yes, the built in white noise is the ear ringing. It started last year as a single bilateral constant high pitched ringing And has progressed during the past year to be three constant pitches- the original high, another fairly high and the third is exactly one octave below the original pitch. On really symptomatic days I will get a 4th lower pitch which seems to come and go. So glad you posted about the "white noise" plugs- that is a great point. I will have to try to find those. With all my other symptoms tinnitus is such a small irritation that it doesn't often come up but glad to know I'm not alone. I do wonder if those of us that have tinnitus also tend to have more cognitive issues..? Hmmm

I have not gone gluten free but a big fan of Gatorade- lemon lime (fewest added ingredients.). I find drinking a big container of it fast can help me out of a small migraine or fog temporarily. On a bad flare haven't found anything other than saline IV therapy. I average about 1 per day and usually take w/ me to the gym. I really dislike the added sugar but seems my GI can handle it. I agree w the coconut water suggestion. I have recently started drinking this and think it might even help me feel better than the Gatorade because of the isotonic component but- it's more expensive and difficult to add salt to. It is also an acquired taste. I do use and love coconut oil - find it is great on the skin too.

So glad you found this forum- some fantastic advice and wisdom here. I ditto the second opinion and suggest you consider making a little trip to either Cleveland Clinic, OH or Mayo, MN for autonomic testing. Then I'd try to find a team of local docs who are willing to work with you- willing to take the advice of out of town docs and study a bit about this on their own. I have a local primary, cardiologist and neurologist I see regularly and then I make my "out of town visits" to specialists as needed. I'm sorry to hear about your daughter's case. Just want to encourage you that this journey you are embarking on is all about perseverence- persevering through dr's who don't really understand Dysautonomia, persevering through the medical research/literature, and persevering through the day to day ups and downs that come with living with this type of rare condition. But you can do this and you are not alone. Welcome.

Interesting about the ear plugs. I have severe tinnitus as a bonus with my case so I have built in white noise- wonder if that counts? As far as dressing- one thought would be to store all you need at a level that is easy to reach. That doesn't require bending or reaching high. This has little to do w proprioception but might make the whole dressing thing a bit easier. (you may already do this.). Anyway, I've learned to put everything I use daily (such as water pitcher, beans and coffee filters) at or just below eye level. I used to have them on the first shelf below the counter, and that little change makes making coffee about 10x easier and eliminates another change in posture. (thus a little less tachy)

I have tried to elevate my bed and tried sleeping in a reclined position. In both instances I was much more symptomatic following the elevation - migraines, parasthesias, pre syncope, fatigue, etc. I have low blood pressure and it was interesting to hear E's explanation. I had always thought of it as another form of tilt training- that, I also can't tolerate due to symptoms.

I have an appt next mo to see Dr, Afrin bc I suspect MCAS. I have wondered if EDS is also involved but I've never had joints go out of place which is what I initially think of w EDS. I recently read a bit about the blood vessel type. So I'm wondering do I have those symptoms? What are the symptoms you all had that made you/ your drs suspect EDS?

No, Allodynia is assessed by clinical exam. When I described symptoms to my Neuologist he told me it was Allodynia- but not a Dx as much as a clinical description for this sensory symptom of touch defensiveness. There is no specific treatment that I know of. To my knowledge no FDA approved drug for this. Is this a new symptom for you? Mine has been present since onset of Dysautonomia.

I was going to suggest looking at Cleveland Clinic's Hemodynamic lab testing. I had that done and it was so helpful in having clinical evidence of severe blood pooling. Interestingly, on th day of my testing I had the following results upon going from a supine position to a sitting up position: - 37% blood pooling in lower extremities - 42% decrease in cardiac output - no change in BP. ( how can that be?) - normal volume of blood. (although we know I'm chronically hypovolemic) - supine Hyperkinnetic circulation All this to say, even with state of the art diagnostics, if I went in and did the same test today I might get very different results. (ie- most times I get wide swings in my BP upon a Postural change, On that day my blood volume was normal yet we know that is not the norm for me due to IV therapy infusions being one of the few treatments that helps me.). As far as the 24 HR urine. I'm not sure how that would give you clinical data about hypovolemia.

I'm so glad you posted. I've been thinking of you the last couple of days and hope you are able to get that tooth out. I suspect temporarily the oral surgery will make you feel worse, especially if you are in a flare, but long term it will help. It is a bit after 11 now so I imagine you are with the Dr now. I am praying for you. Please let us know how it goes when you can.

I have severe Allodynia (diagnosed by my neurologist before diagnosis of POTS- however it is a result of the autonomic dysfunction.) When I'm very symptomatic I cannot handle touch much at all. Light touch is especially bothersome, a hard strong touch is ok. It is amazing how often people touch me ( such as a pat on the shoulder, hug at church, rub of my arm because in my pre POTS state I was a very touchy feely person. Not now. - I've learned to grin and bear it but if I know you well I will tell you to stop.) Even the wind/ fan on my skin hurts like a million tiny pin pricks. Part of my POTS presentation is hypersensitivity in all senses- light, touch, sound, smell, motion. (Sensory Integration Dysfunction.) On a good day I can handle some of these but not on a bad day.

Wondering if This was an IGE test or an IGG? My son, who had autonomic issues several years ago, showed only allergy to corn on the IGE but sensitivity to about 12 other items on the IGG. In this test result it showed which ones he was more sensitive to than others. We picked the top 2. (corn and dairy) and removed them from his diet. It was a huge improvement in symptoms right away. In fact I've been thinking about getting my IGG tested. Anyway, I'd suggest picking the top 1-3 items and not worrying about the rest. Eliminate those and see what happens first.

Awesome. Thanks Jangle. You are amazing. You posted that before I could blink twice. Very interesting article above about no difference in cerebral auto regulation. Thx for sharing.

When up at Cleveland Clinic in Feb Dr. Jaeger, head of the syncope and autonomic department told me about research they were doing using the MRI to look at cerebral hypo perfusion in POTS. He listed all the different theories as to what causes POTS symptoms and this is the area where they hope to learn more. I've haven't seen any results of their work but look forward to hearing more. Meanwhile, while visiting Dr. Thompson,in Pensacola FL, he explained to me exactly what E explained above. He said it is not that the brain is not getting the blood it needs, it is that the brain is not getting the amount of blood it wants. According to him it is not life threatening decrease but can lead to many problematic symptoms. Jangle you mentioned research involving long term review of POTS pts. Where could I find this? Or did I misunderstand? E, like Issie, you go girl! I'm behind you!

Hippy, when are you scheduled to get it pulled? Please let us know how it goes and if you have any change in symptoms.

Took me almost an hour to get through this thread. Perhaps we should all keep adding to it daily and in a few months submit to the Guiness Book of World records for the worlds longest online discussion thread.

During my regular dental exam a year ago August my dentist found a fistula in my gum (a drain for an abscessed tooth.). I had no pain, so I was surprised to discover I had an abscessed tooth. I was given antibiotics and sent for a root canal within days. The root canal went fine. The next day I had tingling a numbness (like the local anesthetic was wearing off a second time) on the same side of my mouth. The next day I had that same sensation on the other side of my mouth. The next day I had it in my right foot, then up my leg, then my left foot, up my arms, neck back, etc. Until 4 weeks later I end up in the hospital with palpitations, SoB and seizure-like episodes. I have been disabled ever since. I was Dx with POtS and NMS in November and have been working at trying to live with this condition. This past July I had a filling done on the left side of my mouth and had a repeat of the above progression. this time I ended up back in the hospital and both the ER doc and my neurologist think something having to do w my trigeminal nerve is a trigger. Two weeks ago I had my annual dental exam which was clean. When the dentist announced no new cavities I almost kissed him. I now am taking extra good care of my teeth because I need that report ever year.

I am one of those with a severe onset of POTS following a root canal. I've wondered the same thing and wonder about this claim that root canals can cause chronic illness. Like MomtoG I question the validity of the claim especially bc root canals are the preferred/acceptedmethod of treatment by most all professional dentists. Can they all be wrong? I am convinced that my trigeminal nerve is a key to triggering my condition (because I frequently have parasethias down all three areas of that nerve on the left side of my face - same side as dental work) and have wondered what would happen if they pulled that tooth and put an implant in.