Serious Breathing Problems, Hyper?

[Victoria]

I apologize for burning up the forum with all of my recent questions. I had a pretty good day yesterday and was able to be on my feet much longer than usual. I was exhausted, but I felt pretty decent until I crawled into bed. As soon as I laid down on the pillow I struggled to breathe most of the night and CPAP wasn't enough to keep me breathing regularly or normally. My body literally forgets to breathe at a normal rate/rhythm! I have to consciously take over the breathing manually. It is completely terrifying when this happens and it wouldn't be an exaggeration to say I'm near death during these times. I wasn't always this bad, the disorder has had an ugly progression.

The other thing I've noticed is that I can sometimes feel so-so as long as I'm moving, but the second I stop everything breaks loose and my system goes completely haywire. What's up with that? Is it the norepinephrine at play wreaking havoc with my ANS?

Can any hypers relate? I've been rushed to the ED many times during nights like this; and although they find abnormalities, no one has been able to pinpoint the cause. Also, is there anything I can do to support my respiratory system at times like this? Out of all my symptoms, this one is by far the scariest.

P.S. My oxygen levels drop down in the 70s and 80s frequently, but no true cause has been found to date.

[lieze]

Oh Victoria...

That has to just be miserable.

I have experienced a mild form of this where I feel my body is not breathing on it's own.

It has gotten a lot better for me though.

I have learned how to belly breathe.

I find if I focus too much on taking air right into my chest it makes it worse and everything feels like it's closing up.

I belly breathe at a fairly decent pace.

I've made the mistake before of trying to slow it down and I gag and get tickles in my throat and everything else.

I actually paced my breathing one night with my sleeping child and that helped me get through it but I hate those episodes.

I used to do it while driving too-very scary.....

[Victoria]

Thanks so much, it is terrifying. Belly breathing, that's what I do, too. My body loses the impulse to breathe on it's own somehow. Big spans between each breath, so I lie awake belly breathing. The big spans between breaths set off my CPAP and it kicks in constantly as it tries to breathe for me. But it isn't powerful enough. . . .

[juliegee]

Hi Victoria & Welcome-

Yes, I have the same symptoms you are describing- terrifying. I saw in a previous post that you suspect you have MCAD- as do I.

First, are you taking a beta or calcium channel blocker? They have always made my symptoms sooooo much worse- especially the breathing stuff. If you are, talk with your doc about getting off that. Almost immediately, but certainly within 10-14 days, you should see a dramatic improvement in symptoms.

Second, I suspect that you are not officially DXed with MCAD, right??? (Unfortunately, that's a whole other topic...) Regardless, are you taking anything to deal with it? A good place to start is with OTC meds that are very benign. You need an H-1 (like zyrtec, claritin, allegra) in the AM, with an H-2 (zantac ranitidine.) This should begin to calm your mast cells down. If you find this helpful, try adding something stronger like benadryl at night. I lived on this regimen for years before my symptoms got extreme & I was forced to get an official DX.

Third, work to find a sympathetic doc who will begin working with you to find the right regimen. Print out the Hyper Pots/MCAD research from Vanderbilt to show your doc. I have found that daily singulair, 10mg in the AM and a nightly atarax, 25 mg in lieu of the benadryl (in addition to the previous AM meds mentioned) have rendered me near normal. I intermittently have severe symptoms and use doxepin in a low dose, like 20mg. That will normalize me pretty quickly. I very occasionally use atrovent via nebulizer and an epi-pen. You may feel better carrying one.

I suspect that your pulse oximeter isn't accurately measuring your blood oxygen. With numbers that low, you'd be blue, etc. I, too, have an awful time, getting an accurate reading- something about my low blood flow, low blood volume and vasoconstricted hands and fingers... If you suspect those numbers are accurate- get to a pulmonologist ASAP.

Take good care of yourself. Try to sleep, relax, and eat as much as possible. I suspect that your out-of-control mast cells have caused your sympathetic nervous system to go bonkers. Consciously work to keep yourself calm with slow deep breathing & meditation. This will get better. You are in a bad spot, but you just need to find the right meds/regimen to turn this around. Better days are ahead.

Healing Hugs-

Julie

[issie]

I have the breathing thing too and also use a CPAP. My Oxygen levels also go too low. For some reason the last two days have been bad for me. I was doing better and now I'm not. I have to use oxygen with my CPAP when I get bad. I used it all night last night and feel better today. Maybe they need to add oxygen to your CPAP. Also, there are other types of machines. It you have both central and obstructive apenea, they have a new machine that detects that and will force a breath for you. The CPAP just has a continueous flow - but, the other one is different. Maybe you need another study. It your oxygen levels are too low with the CPAP they can determine that too. It is a miserable feeling. All day yesterday my levels were in the 80's and low 90's. When I lie down it's lower. It is dangeous if it goes below 90. They want it above that. I have the wild pulse when I turn over in bed too. I think it's the hyper thing - not sure why. The more I learn, the less I think I know. Sometimes, you just question all of it. No wonder the doctors don't have a handle on this. It's far to complex and complicated. I do think that mast cell has something to do with it - but sometimes the antihistimines will further depress my oxygen and slow my respirtory system even more. I've found that Benadryl does that to me. It didn't always - but now it does. Here's hoping for answers.

[Victoria]

Oh, issie. I'm so sorry you also have low oxygen and the breathing disorder. My sleep study doc was going to add oxygen then decided to see how I did without it. Sometimes I do okay, other times I don't, but I know the low O2 is bad. I set off apnea monitors during the daytime when I'm just sitting. My body decides to stop breathing.

What you said about turning over in bed and having a wild pulse? Same thing with me. It starts in before I'm completely turned over in bed and I get all breathless. Oye! I'm speculating that I have Hyperadrenergic POTS with MCAD, and I shouldn't do that. But realistically speaking, everything else has been ruled out. I already know I have a borderline positive TTT, increased norepinephrine, dopamine and pheochromocytoma-like symptoms. Gosh, I can't wait to get to Dr. Grubb.

I rarely take OTC meds because my body doesn't tolerate them well. Benadryl is a good example. It keeps me awake (wired and sweating) all night long and my heart just pounds away. I started taking Claritin 5 days ago at my internist's suggestion for a URI. Now I'm wondering if I should stop taking it. If it isn't somehow wreaking havoc with my ANS? You are right about it being complex and complicated. Yes, here's to hoping for quicker diagnostics, more answers and better treatment.

Thanks so much issie. You're a dear.

[issie]

It would be nice if you had a condenser on hand for the really bad times. If you get a script you can order one on line for allot less than the medical supply places have them. I bought mine outright and now own it. I could do that and save allot in the long run that way. Maybe a trip back to the sleep doc would be good.

It sounds like you have the direction to look as far as the POTS is concerned. These are my conclusions too and test are starting to confirm my educated speculating. Sometimes, if we know the direction to look and tell the doc the test we want - the answers come allot faster - than just waiting for them to come to the conclusions that we've educated ourselves about and done research on. It's all in how you present it. So few doctors know about the different variables involved and don't connect the dots.

[potsgirl]

Victoria,

I'm so sorry that you're having all of these problems. How scary that must be! When is your appointment with Dr. Grubb? Is someone going with you?

Mack's mom has some excellent suggestions for you. It sounds like you're pretty intolerant to a lot of meds. Many of us are. I can't take Midodrine or Florinef, for example. Sometimes it helps to take tiny doses and build your way up.

I'm sending you positive energy and thinking of you. Take care of yourself, and let us know what happens when you see Dr. Grubb. I know he'll be great for you.

Cheers,

Jana

[Victoria]

Julie,

For some reason I didn't get notification of your post so I didn't see it. Thank you so much for the wealth of information. Yes, I am in a very terrorizing and agonizing place. Honestly? If I don't get hope of relief soon I'd simply rather not live. I wouldn't dream of taking my own life, but I do pray that I just pass quietly in my sleep. I've reached the point where it's too much for me to bear.

I'm not taking a calcium channel blocker. My cardio prescribed it years ago and it was intolerable, so I've been flying solo with the cardiac issues. He discussed ablation, but I put the brakes on that one as well. Oh, and you're correct. I'm not officially diagnosed with POTS, let alone MCAD. I had a brochure about POTS (from this site) sent to my internist, and his nurse told me she threw it away because it was in brochure form. I wish I could have one mailed directly to me so that we can get it to him.

I just started taking Claritin in the a.m. for allergy-URI symptoms. Can you please explain what H-1 and H-2 are and how they relate to this disorder? I am unable to take Benadryl as it stirs up my symptoms horribly. It keeps me awake and in fight or flight mode for some reason. Is there something else I can try? Albuterol, novacaine and epinephrine seem to make my symptoms worse. I've had many prolonged "storms" that began in the dental chair, so I've instinctively known to avoid those. Is there something else I might try? Or is it possible that I may experience a worsening of symptoms before they got better? This is so confusing to me. I used to use an albuterol inhaler for "asthma" like symptoms, but now realize that I always had POTS symptoms with my attacks. Do others cough, rattle, wheeze and squeak when going through a really bad patch, or is it just me? If so, what is the significance?

The pulse oximetery(s) have been accurate, but I should have clarified, I don't have one at home. I can tell when my O2 gets too low, and the times when I was in a critical care unit (locally) they turned off the alarms on my cardiac monitor because it was going off constantly. They claimed that the monitors were old and unreliable, but I've had the same thing happen in other facilities. Big sigh. I had a sleep study at Mayo and the results were that I should be on mechanical ventilation. The sleep study doc there called it a technical error because they couldn't find a cause for the respiratory problems. He said he'd never seen such strange results in his career before. Please understand I'm not Mayo bashing, I just had a bad experience there that created a non-resolution of my health care. It still is, because many doctors believe if Mayo can't find the problem then it must not exist. Anyway, I've obviously long since sought out another sleep study clinic and have had better luck, but my machine needs tweaked, I need a different machine or I need to be on bipap.

Mayo also said my PFTs were so bad that I needed a lung transplant/lung reduction surgery. They retracted it months later because my PFTs returned to normal and they couldn't come up with a logical explanation. Personally, I think it was my ANS hopping all around and they just didn't nail it. I've been to many pulmonologists and they can't figure me out. I even had a lung biopsy/bronchoscopy that was normal.

I also have low blood volume or hypovolemia frequently. I recently had breast reconstruction surgery post breast cancer and I was in dire straits again with hypovolemia and low sodium. Surgeries affect me for months afterward, but this one wasn't so bad. I take magnesium and sodium chloride tablets, and it has helped somewhat. I also must stay hydrated and drink Powerade Zero to do that. It is quite a trick to stay hydrated in the hot and humid summer months here.

Julie, I didn't mean to drone on and have a big pity party at your expense, but it does feel good to tell a bit of what I've experienced to someone who understands. Someone whose been there. Thank you so very much for all of the tips and for the heartfelt encouragement. Most days I just sit or lie down watching the seconds go by, feeling very helpless. Other days are not as bad and I can walk a little bit, and even drive. If you can think of a replacement for the Benadryl and Albuterol; or if you think my body would eventually adjust, will you please let me know?

With heartfelt thanks,

Victoria

P.S. I read it once and now I can't find it. Where is the Hyper Pots/MCAD research from Vanderbilt?

[juliegee]

Hi Victoria-

I just have a few minutes, but will post more later. The H-1 and H-2 are both antihistamines that work on different receptors. Something about the combination of the two makes it effective against the effects of degranulating mast cells. They must be taken together to get the full effect. A stronger antihistamine at night is also a great idea. I worry that if benadryl doesn't help you.... maybe because your symptoms are NOT caused by degranulating mast cells OR it's something about the benadryl itself. Benadryl is not my antihistamine of choice- if I start to have a reaction during the day, I use zyrtec instead. It is so much more effective for me. A hyper response to benadryl is not unheard of... maybe that's waht's going on. For PM, I like Atarax, 25mg or doxepin, 20mg.

The albuterol commonly causes tachy as does epinepherine, (which is in most novocaine shots) if you are not in the midst of anaphylaxis. At my worst, I couldn't even tolerate a sip of a caffienated drink, it would cause awful tachycardia.

The breathing problems are common with MCAD. I use atrovent via a nebulizer when my symptoms are bad. This is when my chest hurts when I breathe in- like a knife is stabbing it- not for the forgetting to breathe problem. I suspect the H-1's and H-2 will help with that. Daily singulair also helps everything for me.

Try the H-1 and H-2. If it helps, I think you are on to something. Once my mast cells calmed down, my autonomic symptoms improved greatly. I suspect yours will too.

More Later-

Julie

[issie]

For me with apenea, I can't take a strong antihistimine because it suppresses the respirtory system even more when my brain already doesn't tell me to breathe - especially if there is central apenea. The strongest I can take without real issues is Claritin and Tagament.

[anna]

What is your peak flow like when you feel bad?!! My daughter has just had a bad bout of breathing difficulties, her GP was not happy with my daughters low pulse O2 levels and low peak flow, so gave her an Sulbutamal inhaler to use when needed. The GP did tell my daughter she did not think the low peak flow etc. is due to Asthma but feels that it is more likely bronchial spasms linked to either my daughter ANS stuff or her EDS!! My daughter also has loads of eptopic beats that seem to cause her problems.

[Victoria]

Thank you Julie, issie and Anna. My dog chewed up my peak flow meter a long time ago, but during episodes it isn't very good. At my worst I can't muster up enough strength or air flow to blow my nose. Bronchial spasm seems to make sense for some of my respiratory problems, but not all of them. This may sound strange, but all of my respiratory problems are worst after I've eaten too heavy of a meal (carbs), overexerted myself, had surgery or am under stress. I don't understand it.

Julie, I didn't know Zantac contained an antihistamine.

Thank you all so much for enlightening me. I'm still trying to feel my way around the information on the site. I'm a slow learner but I'm beginning to understand it in little chunks. Sure wish I could get this brain fogged mind of mine to work better.

[juliegee]

Hi Victoria-

You are NOT a slow learner. This is tough stuff to grasp especially when you are in the throes of the illness. Doctors are just learning about this. I am still learning every day and have hardly scratched the surface.

I can barely blow 300 on a peak flow meter... My pulmonologist also said reactive airway disease. As I recall, you are DXed with this too. What do you take for this? I have to avoid most scents, take my meds & I'm OK. The worst for me is when I use the self-cleaning function on my oven As far as I'm concerned this is just another manifestation of MCAD- different name for the same horse

The pulse oximeter thing is weird in those of us with dysautonomia. I recently failed 2 six minute walk tests because my sats drop to the 80's and below if they''d let me keep walking At times (when I'm vasoconstricted) it doesn't work at all on me or reads really low- probably because the blood is shunted to vital organs. (In other words, your finger no longer has a readable pulse, but O2 is still getting to your heart & brain.) Our hypovolemia, vasoconstriction, and reynauds (if you have that) all interfere with accurate readings. I think drawing blood from the femoral artery, and checking blood gases may be the only way of truly getting an accurate measurement on some of us.

Zantac doesn't contain an antihistamine. It IS an antihistamine and needs to be taken in conjunction with an H-1 to treat MCAD:

http://en.wikipedia.org/wiki/H2_antagonist

I'm going to pass along some links that may be helpful for you:

The Mastocytosis Society has a good explanation of MCAD. Click on the word "mast-o-cy-to-sis" at the top of the page.

http://tmsforacure.org

Here are links to some sites that have great info AND forums. It's eye opening to find that there are others like us Sometimes I feel like a separate species.

http://mastopedia.com/tiki-index.php

http://mastcelldisorders.wallack.us/yabb/YaBB.pl

http://cmsadmin.proboards.com/index.cgi

Keep studying and asking questions. There are lots of things you can do to help yourself NOW, like the H-1 and H-2. Being educated & finding a knowledgeable doctor is the next best step. Mast cell specialists are far and few between. I have found the best thing is to find a good local doc, usually an allergist, who "gets" this and is helpful in figuring out the best regimen for you.

Hang in there. I suspect you will greatly stabilize once you figure out the right mix of meds. You seem to be on the right track.

Hugs-

Julie

[Victoria]

Julie,

I had no idea Zantac was an antihistamine! Do you know if it's okay to take Claritin in the morning and Benadryl at bedtime? I don't have any Zantac on hand.

I've been sensitive to Benadryl in the past, but I did okay when they gave it to me in the hospital for pain not too long ago. I'm pretty desperate to try something, anything that would give me relief.

Thank you so much for telling me I'm not a slow learner. I sure feel like I am, but it is a sharp learning curve. I have not even been diagnosed with POTS just yet, but based on my cardiology reports, dehydration, low blood volume, the one TTT I had in '02 or '03, neuropathy in my feet/lower legs and everything else, it sure seems like I may have finally hit the jackpot.

These are the results of my autonomic testing: "Evidence of distal postganglionic sudomotor and cardiovagal/cardiovascular adrenergic impairment.

QSART responses were reduced at the foot site (-99) and normal for other sites."

I can't even believe what you said about your self-cleaning oven!!!!!!! OMGosh. I react to that chemical-like smell so horribly it isn't even funny. It feels like it permeates my brain! Everyone thinks I'm crazy, they don't smell anything and it doesn't make their heart race. I also have to avoid bleach, cleaning products and some perfumes. Particularly the old Avon ones.

What you said about the blood shunting away from the finger and O2 sats makes complete sense. Could this also explain why nurses have a hard time getting my pulse? Why I have trouble with finger sticks for blood? I also have a Raynaud's like syndrome where my hands turn white, blue then red. Happens to my nose and feet also. My feet are freezing cold a lot of the time, even when we have 98 degree weather.

Thank you from the bottom of my heart for the information! I feel like I'm finally, FINALLY going to make progress. You have no idea just how thankful I am.

Grateful,

Victoria

[juliegee]

Hi Victoria-

Yes claritin in the AM & benadryl in the PM is fine. If you get revved up with benadryl, take it earlier in the evening, like after dinner, to give yourself time to settle down to sleep. Those 2 H-1's with a morning zantac/ranitidine should be life changing for you. Find a sympathetic doc to write a prescription for singulair (which you should be taking anyways for your RAD) and that should further stabilize you. Trading the benadryl for atarax, 25mg was life-changing for me. Think about adding that if the benadryl isn't enough. Pay careful attention to how your body reacts to this. If you don't improve, it's probably not MCAD.

I know- using my self cleaning oven almost kills me...really The worst!!!

Better days ahead-

Julie

[Victoria]

I took the claritin yesterday morning and benadryl last night without fallout. I'm trying to remain cautiously optimistic, but I must say I'm stunned at the way I'm feeling. My heart isn't pounding out of my chest, I'm not lightheaded/disoriented and I'm able to get up out of my chair and walk around without fear of sinking. The anxiousness is gone, I wasn't up voiding all night and I feel calm — a calmness that I haven't felt in decades. This sense of well being is amazing. Could I really have MCAD? After all I've been through I'm afraid to believe it.

I'm going to try to snag some Zantac today, but I don't think my internist will write a scrip for singulair. The Atarax . . . is it Rx or OTC?

Stunned and forever grateful,

Victoria

[juliegee]

Woo hoo, Victoria!!! I suspect you will continue to improve- doesn't mean you won't have setbacks. But, I will pray for steady recovery. I'm cautiously optimistic with you

Why in the world wouldn't your doc write a script for singulair??? You are DXed for reactive airway disease. Sorry to say that atarax, 25mg is also a prescription. I suspect that you may need to find a doctor that is open to learning about all of this with you. Even though I tested negative for any and all allergies, my wonderful allergist still treated my symptoms appropriately w/o a definitive DX. I would have died otherwise. You deserve the same treatment & compassion.

Fingers & toes crossed that you will continue to improve!!!

Julie

[Victoria]

Julie,

Woo hoo is right! The difference is like night and day!!!! I've lasted most of the day on my feet with a steady HR/BP, no anxiousness, no sense of impending doom, no flushing or shakiness, and I'm also pretty much pain free. Astounding! I'm worn down this afternoon but most of my symptoms are just hovering on the fringe. This is unbelievable and the change is dramatic yet surreal to me. Will someone please pinch me? I'm also cautiously optimistic and I'm praying that I continue to improve.

My doc has been brushing off almost everything I report to him lately and I'm a bit shy to ask right now. He acts a bit suspicious because he knows I've never given up searching the internet for answers. I've questioned whether or not I have so many things that he's put on the brakes with me quite a bit.

What is the difference between albuterol and singulair as it pertains to MCAD? I'm trying to think of a way to approach him about it without rumpling his doctor feathers.

BTW, can stridor (like croup) be caused by MCAD? When I'm really feeling bad I have episodes of stridor with a loud whistle in my upper airway — it sounds like it comes from my throat area.

Thank goodness for your open minded allergist! It's so refreshing and heartwarming to hear of doctors like that, and to hear that you are making a comeback from the brink of death. I hope you continue to recover and you can count on me to keep you in my thoughts and prayers. This is scary and dangerous stuff. The worst part is I knew I was going to expire right under their stethoscopes because they couldn't find anything wrong with me. So many close calls. . . .

Yes, fingers, toes and eyes crossed that this isn't a fluke and I continue to improve!

Thank you so very much Julie. I'm so glad you shared information with me and I was receptive to it.

Victoria