Diagnosed And Overwhelmed

[Sarah4444]

I used to be an intelligent, capable person. Now I am struggling to understand what is going on in my body, and most frustrating of all, what has happened to my brain. I just had a tilt table test, and my POTS diagnosis was confirmed. They are still waiting for bloodwork results, but I would bet I have Hyperadrenergic POTS - when I read the posts of those who have been diagnosed, my experiences are very similar. I was also diagnosed last week with a Hereditary Disorder of Connective Tissue - overlap of EDS and Stickler Syndrome. These add to my list of previous diagnoses: pituitary micro-adenoma, hypothyroidism, chronic pain, migraines... I suspect I also have mast cell involvement.

Like many others here I have trouble sleeping and concentrating, so I spend many sleepless hours trying to figure how this all fits together to make me feel so awful. I read article after article and can't seem to retain the information like I used to be able to. I have increased salt and fluids, use compression stockings (is it true their effectiveness wears off with use/time?), tried and discontinued Florinef, take Midodrine, and the MCAD meds. I have noticed some modest improvement in symptoms - I am no longer bedridden, but hardly functioning either physically or mentally.

Sometimes I feel like some of this makes sense to me, but other times I get so tangled up in theories. Is POTS fundamentally caused by blood pooling? If so, what causes the episodes people call "adrenal surges" that occur when I am lying down and/or sleeping. Is the pooling caused by lax veins (EDS), autonomic dysregulation caused by brain stem compression, some fault with the structure of my nerves, an auto-immune process, mast cell degranulation... I am overwhelmed by the number and nature of my symptoms, yet feel like if I don't sort them out and try to address their causes I might end up in worse shape than I already am.

Also, I have gone from having doctors who are unable to figure out what is wrong with me, to having multiple specialists who have a variety of different suggestions about what I should try. The cardiologists/autonomic lab people want me to try beta blockers again, but I have read one shouldn't use beta blockers if they have MCAD (can anyone tell me why?), and I think that MCAD might explain some of my more unusual symptoms (itching, rashes, bp crashes while lying down...?). The neurologist has focussed on the dizziness and wants me to try domperidone - something about blocking Dopamine and helping Parkinson's patients with dizziness. The connective tissue specialist believes the autonomic symptoms are caused by brain stem compression and wants me to try wearing a collar. And I can't find an MCAD specialist in Canada yet, but am increasingly worried that I have symptoms consistent with lymphoma (my cousin was just diagnosed and while reading her information I became even more concerned). Whose advice do I take? My GP says this is all "over his head", but he is my only local doctor.

Is anyone out there feeling well enough to try to help me sort some of this out? Is it true that hyper POTS people and MCAD people should avoid beta blockers? If so, why? More fundamentally, what is happening that makes me feel this way? Is cerebral hypoperfusion caused by pooling or blood being diverted from the brain by autonomic dysregulation, or something else? Is utter despair a POTS symptom?

Gratefully yours,

Sarah

[issie]

Hi Sarah,

It is totally confusing and so complex that we will all be so knowledgeable about how the body works before we get this figured out. I have EDS too and a real problem with my blood vessels and in holding fluids in my cells properly. I have found that the compression hose are ABSOLUTLY essential and have to also sleep with them. I do not take the florineff, nor do I salt load - unless I feel especially dehydrated and then a G2 is in order. I have been using himylian and sea salt because it has the minerals in it and will help your body carry the salt and fluids to where they need to go better.

I recently tried propranalol (a beta blocker) and have found that I rebound with it and it caused high blood pressure and worse tachy - in the long run. I was on it for about 3 weeks - a very low dose and found this out. (We're having a discussion on this on another thread - right now.) I too feel that I'm hyper POTS and have a mast cell issue. The claritan at night has helped my sleep - but I do wake up with the tremors taking it. But, I feel that the sleep is more important than an external and internal shakiness and unease feeling. (I'm a little afraid of the H2 blocker because I feel that I need to keep my stomach acid up because of digestion issues. But, if I'm having an especially bad moment a Tagement comes into play.)

I'm sorry I don't have more time to add to this, but maybe this much will help a little. You're not alone in this, and there are others, including me that have the same issues and are trying to sort this all out. The brain fog, confusion, lack of retention - just another part of it. I'm thinking part of it is lack of oxygen. I recently started back using my oxygen with my CPAP - in the last two days - I feel so much better. Got up singing and humming this morning. WOW!!!!! Big DIF!

[Tia Koul]

Gosh, I am so sorry you are so stressed. I really can't offer any concrete advice other to say we are all here for you. A state of despair is not so uncommon, but I believe you are processing a lot of information right now which is overwhelming. I truly cannot comment on your issues, since I only the basics about my own. But stress is a no no. It really doesn't help us at all. Our response to stress is very exhausting. If you have hyperpots, your adrenaline is pumping which wipes you out. Try to pace yourself, think about this in small sittings. Don't overwhelm yourself too much. I've had this on a chronic basis for as long as I can remember. Today, my vision is canging, my memory has gotten worse, typing is very tiring bc I can't spell or read correctly, or focus well. It happens. But just take it slow. I would certainly reach out to as many professionals as you can, but also take breaks. If you think lymphoma may be present, seek out the care of an oncologist. Ask your GP to get you a referral. Try not to overstress yourself. There is a lot going on, and believe me, I try to get it all figured out too. But try to cover the big bases first. And don't worry about the smaller issues right now. Just try to rest up and eat well and not exhaust yourself. If possible! I'm sorry I can't offer more help about your specifics... but let me know if you need to talk. We are all going through the same thing. Oh and when you are not well and your body is fighting to keep up, depression can set it. So, don't let this discourage you, just try to do less and put on a good movie to relax if you can! Oh, i take beta blockers... bystolic and also mestinon. So, I am pretty sure it's ok for hyperpots, but not sure about your other issues. Wish I could help... hang in there, ok?

[Tia Koul]

Also, there is a group on FB for hyper pots... Look up 'hyperadrenergic pots'. xoxo

[TXPOTS]

There is no contraindication for beta blockers and hyperadrenergic POTS.

Beta blockers are generally avoided in mast cell disease.

[Chaos]

Not a pharmacist here but I would suspect that Beta blockers are contraindicated for MCAD people because of the potential risk of an anaphylactic reaction. I know when I was discussing getting allergy shots with my allergist, he said I had to stop my beta blocker for at least 24 hours before every shot in case I had an allergic reaction to the shot. If you have an anaphylactic reaction, the initial treatment is epinephrine, with which the beta blockers interfere. So from what I've read and gathered that would explain why they say to use caution with beta blockers for hyper-adrenergic POTS/MCAD patients. (I'm thinking the caution for the Hyper-adrenergic type comes because of the article from Vandy where they made the association between people with Hyper-POTS who also had the MCAD thing going.)

If it makes you feel any better, even my local cardiologist (who originally diagnosed my dysautonomia) was asking me last week, "So after all the visits to all the different doctors (including out of state, nationally known centers) have they ever come up with a 'unifying theory' as to what is causing all these symptoms?" My answer.."No!" Now I just have a lot of different diagnoses but no one has been able to figure out why. They just label it "idiopathic"... meaning it's happening and they don't know why. I'm blaming it on the EDS, since that connection seems to be well documented, although it still doesn't explain WHY it happens. Even at Cleveland Clinic their recommendation was "treat it symptomatically."

I have suspected an MCAD connection in myself as well. I did do better with the H1 and H2 blockers for awhile and then the migraines just kept getting worse and worse. It seems that there are different theories as to whether an MCAD condition causes dysautonomia symptoms (Mack's Mom is in this category, I believe) or whether the dysautonomia causes the mast cells to dump histamine inappropriately (Ramakentesh has mentioned this one). From trial and error, I'm starting to think that I fall into that second category. I have had several really high blood histamine levels but once I got on the florinef, midodrine, beta blocker, bupropion, etc, a lot of my mast cell type symptoms improved even without the H1 and H2 blockers.

It's all just a GREAT BIG puzzle that we're all trying to figure out as best we can. Since we're all different we are all kind of stuck trying to figure out our own bodies- frequently without ANY help from medical people. That's why it's been so great having this forum where we can bounce ideas around and compare notes, research, symptoms, meds, etc. Then we have to take what applies to us and go from there with the trial and error stuff we all get to do. Personally, I doubt they'll have all this figured out in my lifetime.

I haven't been able to find an MCAD specialist locally either, but have had some limited success with an allergist who is at least willing to do some research and read what I bring in to him. If nothing else he said he'll facilitate sending me out of town again to a center where they know the stuff. You might be able to find someone similar.

It's certainly frustrating and at times TOTALLY overwhelming. Right now I'm doing really well (not normal but SO much better than I was last year at this time) but I sure remember the days of being as you say you are now. Hopefully the meds will help straighten a few things out and then a gradual exercise program may be able to help some too. It took me a LONG time to understand just how "gradual" it needed to be but it really did help me once I quit over-doing it and setting myself back. But for me, I couldn't even start an exercise program until I got the meds helping first. And I HATE taking meds and have always been very big on exercise so it's been a hard lesson to learn!

If you really suspect lymphoma get in, at least to your primary, and have him do some blood work.

Hope you feel better.. at least a little at a time. Give yourself a big hug for me!

[Guest tearose]

Hello Sarah,

Welcome. I am sorry you have to deal with all this but take comfort that you are among others like you here. You sound like you are right on target with all your questions and your exasperation. This ANS field is still being studied and we must advocate for ourselves!!!

I too have the Hyperadrenergic form of POTS and it is due to MVP I must avoid beta blockers. (In me, it creates an electrical problem...a bundle branch block)

You have to know the status of you entire body to fully appreciate and understand the effects drugs may have on you.

I did not tolerate a BB.

I do mostly non-drug treatments because of my extreme reactions and sensitives to drugs. I have learned how to manage. In all these years, I haven't been "cured" but I feel very blessed to have found a way to get the most out of life and this funky body.

I was fortunate to make a workable treatment plan with a Mayo ANS neurologist and EP cardiologist.

hang in, you will grow stronger and wiser in a very brief time!

tearose

[Sarah4444]

Thanks, everyone. I think I have been feeling particularly stressed worrying about the genetic component of this and how it may affect my kids. I am going to try to take things in more slowly to adapt to my hypoxic brain. I really appreciate the support.

[juliegee]

Hey Sarah-

Welcome home. Sorry it's taken me so long to get back to you- crazy here. So many answers....and so many questions still. I hear your frustration.

For what it's worth, beta blockers worsened my symptoms dramatically....so dramatically that I even experienced anaphylaxis. Because I was on beta blockers, the epinepherine was NOT as effective as it should have been & more was administered in the ER. Scary. Beta blockers are notorious for worsening any allergy or asthma symtoms. My docs settled on a calcium channel blocker. It offered some of the benefits of a beta blocker without the risk of a beta bocker- might be something to try.

I'm so happy the MCAD meds are offering some benefit. It wasn't until I added 25mg of atarax (in addition to all of the rest) that I really began to turn around. Finding the right balance is an art. Hopefully, a good allergist can work with you to figure that out w/o getting hung up on a DX.

I'm a little confused about the domperidone recommendation. That's typically given to patients with slow GI motility (which includes many with dysautonomia.) Your neurologist thinks it will help your dizziness symptoms? "Dizziness" is typically caused by low blood pressure. Is that the case with you or are you experiencing vertigo (room spinning)? Regardless, you're not DXed with Parkinson's.....

Tell us why you are worried about lymphoma. I've recently been DXed with leukopenia & that's on my radar too. Scary.

BTW, I also have the pituitary microadenomas, dysautonomia & connective tissue disease... I really don't have a clue as to what causes what It's overwhelming for sure, but I am blessed to be on a regimen that has stabilized me. I pray you find that- I suspect that you're on your way.

Hugs-

Julie