Katybug

97.1 is my new normal since developing POTS.

Welcome! 

I'm very ill so this will be short. To your question, some have found they have CVID, chronic variable immune deficiency.  To test, total Ig, plus all Ig subtypes, IgA, IgE, IgG, IgM need to tested. It's rare but at least 2 or 3 of our members have been diagnosed.

Here are some past threads to get you started with some answers:

Have you had any issues with or could you have issues with spinal instability which might be impinging on nerves when upright but allows for relief when you lie down? Spinal instability is quite common in EDS? Tethered cord? Chiari? 

Happy Thanksgiving!! 

I have several things that go on with my bp (low, fluctuations, narrow pulse pressures) but they aren't consistent. Florinef helps you retain fluid and should increase your bp as a result. The theory is that having a higher blood volume and stronger bp will allow the tachycardia to subside to some degree. 

This week, in the U.S., we will celebrate Thanksgiving! It makes me reflect on how important DINET and this forum has been to me and so many other patients and caretakers. Thank you, DINET community for all your support! And, in that vain, please help me welcome our newest members, in hopes that they find the same warm, supportive, and knowledgeable place to land here at DINET:

Michelle        The Abyss       Jaclyn

Laura70        brenda123      Ktownsend 

Mommaj       Goyo                SarahNL75 

Ellie               potsmommy     Jrobo 

Ana              lucaskk1991      Makrina 

pinkpoet8813    Tamara        Donna

hdalford          PANS              btrfly_lady 

Dani               Ang                    katcanny 

Tiffany        EdgarBN         POTSandpans

JillS             Rowan             Sudaloosue

cowboy1      ksmith35801        ckrich 

Momto3EDSAutonomiababies

hanniecannie      Johnl2          Sasha

Aaay_macaroni       Kizzy          Jenn

Hi Tiffany, 

It is not unusual to have to wait for specialists if they are very specialized. I do have a cardiologist and a neurologist.  The cardiologist was the 1st to diagnose my POTS, but she is not a POTS expert,  so I see the neuro who is a POTS expert. I initially asked the neuro if I needed to continue with the cardiologist.  He said, yes, he prefers for me to see her periodically. That worked out well because I have also been diagnosed with Ehlers Danlos Syndrome and need to have a cardiac echo annually.  So, my cardiologist and I see each other every 6 months at this point unless something comes up, for example, we are taking me off a med that seems to now be contraindicated due to my EDS. I am doing a six week follow up with her because of this. If all is well, then, we go back to six months. The neuro sees me every 2-3 months depending on what we have going on. I really think having one or both depends on the level of knowledge they have. 

Hope that gives some insight! Hang in there! 

Katie

I find quinoa to be very filling as it has complex carbs, high protein and all essential amino acids. I think it fits with a low histamine diet. Also, as boring as they are, carrots. They fill me up. I try to dress them up with some hummus.

I, too, experience the overwhelming hunger even when I have just eaten a complete meal. Sometimes, I just have to deal with it but it's hard to ignore. I have found that sometimes, if I salt load first and fluid load, it can help kill some of the hunger. I find salty broth or soup will sometimes do more to kill the hunger than a meal or solid food.

Hello Forum Members!

It is a pleasure to make my first post as the new Volunteer Coordinator for DINET!! 

We have a need for a volunteer to step up for an open Forum Ambassador position! The Forum Ambassadors are basically our welcoming committee for new members! It is not a very time consuming position, but, it is very rewarding! It can be done completely from the comfort of your couch or bed, and, at whatever time of day you are at your best (bonus!!). Below is the job description. If you would be interested in giving back to our community by performing this role, please send me a private message here on the site, or, an email at volunteers@dinet.org. 

Hope you are all having a good day and thank you for considering a volunteer position with DINET!

Katie

Job Description - Forum Ambassador.doc

Job Description

Forum Ambassador

Reports to: General Board Member (Sarah Abraham)

Estimated weekly time investment:  .5 – 2 hrs/week

Job duties/responsibilities:

-Welcome new members to the forum

-Participate in one of the following tasks: New Member Private Welcome Messages, Birthday Messages, or Weekly New Member Forum Post

-Help answer member questions regarding basic navigation of our website or functionality of the forum, i.e. how to use the private message function or how to set up profile information

-Communicate with other volunteers on the Volunteer Forum and via Private Message

-Provide back up of the other Forum Ambassadors' tasks on an as needed basis

Job Requirements:

-Ability to spend 5-15 minutes daily communicating via the DINET Forums or Private Message with members and/or other volunteers

-Ability to perform your assigned duties without direct daily supervision

-Ability to be a self starter regarding your daily assigned duties

-Strong written communication skills 

-Basic understanding of the resources our website has to offer 

-Basic understanding of how to use our Forums and Private Message functions 

Signed!

Midodrine is known to cause side effects that mimic a sympathetic nervous system response which is what increases a person's BP. It sounds like you might have had exaggerated side effects.

I didn't have any side effects,  but I also had no change in my BP either, when I tried it.

Hang in there, Womble! I'm sorry to hear your son and you are struggling just now.

Have they tried doing a prednisone burst to see if it suppresses your symptoms? 

Joe,

I'm gonna have to find that podcast! 

Hi ares22,

I don't have any experience with this. I just wanted to say hi and that I'm sorry the IVIG hasn't been enough to Co troll things. Good luck with your next steps.

Katie 

Many people with autonomic dysfunction have problems with adrenaline dysregulation. Things that used to cause a "normal" amount of emotion before, may now cause adrenaline overreactions. It can be physical or emotional stimulus that causes this. Some people also seem to have adrenaline surges for no reason at all. There's actually another active thread right now that even talks about being awoken from sleep because of inappropriate adrenaline surges. This is a fairly common symptom with our community. 

My chest pain has only been improved by different medications. I am not currently on all these (because I can't take some of them at this point due to allergy issues) but meds that improved my chest pain were metoprolol (beta blocker), verapamil  (calcium channel blocker), and mestinon. I used to hate the chest pain because it was scary but I think over time, I became mentally adjusted to it.

I personally take some supplements that help me a bit, although they are no miracle cure, with energy and brain fog but I would encourage you to consult your doctor before trying anything new. I have had some success with CoQ10 and a really good B-complex. Some take B12 which I tried and didn't find much benefit  (even from injections). But I happened across an article that talked about the fact that many with B12 deficiency also have other B vitamin deficiencies but docs don't generally test for the other ones. My doc told me it was ok to try. I found the B complex more helpful. I also have a lot of inflammatory issues which we can't explain. When my inflammation is flared so is my brain fog, so I have found a tumeric and ginger supplement helps my inflammation and symptoms that come with it. 

I also find playing games that help with neuroplasticity such as memory games, simple addition/subtraction /multiplication,  crosswords,  word finds, spatial recognition, really help keep my brain sharper through the brain fog. If I skip a few days of doing these types of exercises,  I can really start to feel the fog rolling in. It took me about two weeks of consistently doing these exercises to feel like it was making an impact. Even spending 10 minutes a day on this seems to help me maintain a higher function. 

Hang on there. It will take some time to find the things that will work for you as we're all a bit different with this. There will be some trial and error. 

I am diagnosed, through a daytime sleep study,  with significant daytime hypersomnia.  So, in my case, I sometimes do not have a choice but to take a nap. If I don't I become presyncopal and have had moments when my body has started to collapse (without passing out.) Not all POTS patients have sleep issues/disorders,  but it's not uncommon in our population.  I think many of us have benefited from having day and nighttime sleep studies. 

Hi katcanny, 

Unfortunately,  what you describe is fairly typical of what many of us experience.  

While you wait for additional information from your doctors,  there are some standard lifestyle changes that many of us use: salt loading,  fluid loading, wearing compression stockings, meditative breathing to help get through the adrenaline rushes.

Hang in there!

DizzyGirls is correct.  Beta blockers are contraindicated for mcas patients but it is usually due to it causing breathing/asthma type issues.

I have flares I'm my POTS when I have flares in my inflammation  (for which we don't know the cause.) Usually,  getting the inflammation under control helps bring my POTS down to a more liveable state. 

This is a link to an older thread on seizures.

Hi Gertie,

I have sluggish adrenals although not full blown Addison s disease. I always feel terrible after a highly stressful event. I can never predict how long it will take to recover....there seems to be no rhyme or reason to it. I hope you feel better soon.

Katie 

Each week, we find there are more people who need our resources and support! We are always so glad to see that they have found their way to our website and forum! Please help me welcome our newest members:

ckrich

Johnl2

aaay_macaroni

Sasha

Kizzy

Jenn

hanniecannie

Momto3EDSAutonomiababies

ksmith35801

cowboy01

Sudaloosue

Rowan

JillS